Saturday, May 12, 2018

MAKE HER PROUD

I wanted to write a birthday post because May 2nd marked my mom's 100th birthday. I could not think of anything to say that I had not already said. The day passed. I  spent most of the day in my room thinking about what my mom loved the most about her birthday. Two things. Coffee with Kahlua and free birthday desserts. Her birthday usually lasted until we'd patronized all her favorite restaurants. Unlike me, she did not mind restaurant staff singing Happy Birthday to her. She knew after they sang, she'd be given her dessert.

I started to think about writing a post for Mother's Day. Again, I did not know what to write. This photo was taken in 1976. I was nineteen years old. It depicts how we spent most summer afternoons. Swimming. I remember the hydraulic lift. I remember sitting in the sling. I remember my mom attaching the sling to the lift. Mom would raise the lift and position it over the water., I would dangle there until she got into the pool  "Mom, please hurry up. I could fall in,' I'd tell her. "Oh, you're fine. Give me a minute," she'd tell me. That was my mom.

When this photo was taken I had many hopes for my future. I wanted to be a medical social worker, get married and have a family. I wanted my mom to be proud of me. My life did not work out the way I had planned, but I know she was proud of what I accomplished when she was alive. I hope she is proud of the way I have handled things since her death. I failed a lot, cried a lot and even cursed a lot, but I made it. My mother was a strong person. Whatever strength I. have. I got from her.

Someone told me when I had to leave my house and move to a facility, that  I should say, 'Come on, Mom, it's time for us to go now." I did. I know that she came here with me because I feel her presence all the time.

July. 1st I will finally be moving into my new home. I  know my mom will come with. I hope I will continue making her proud as I begin my new life.

Happy Mother's Day Mom. Happy Mothers Day to all the moms. who read this post/. May your children continue making you proud. 




Thursday, May 3, 2018

STICKS AND STONES

RecentlyI heard a resident call another resident the R-word,, the derogatory term for someone who is mentally challenged. I was eating breakfast. I was shocked and offended. This is 2018. I thought that everyone was aware of how offensive and politically incorrect that word is. I didn't say anything. .I left without eating breakfast. I could not believe it. At lunch, it happened again. A resident mocked an elderly resident with Alzheimer's. When it happened a third time, at dinner, I'd had enough.

Those who were being made fun of were unaware they were targets. I felt sorry for them. A cruel disease had stolen their mind. it was not their fault. I felt I had to stick up for them.

I told the residents who were guilty of doing the mocking and laughing that we were adults. I told them they were acting like children. The response I received was,"Go eat somewhere else." I felt sorry for the residents at my table too. 

I have been laughed at,  mocked and made fun of my entire life. I have been labeled and assumed to be mentally challenged.  I know what names and labels feel like. I could give examples of incidents that happened to me in high school. This post would turn into a Poor Me post. That would serve no purpose. The sad thing is the school I attended was for physically disabled children. Everyone who attended had some kind of physical limitation. They were not tolerant.  Disability or not they were kids. They loved making fun of me. Everyone living here has a reason for being  We are adults. Some residents act just like the kids in my high school class. That's sad.

My former roommate thought that I hated her. The truth is that I didn't know how to deal with her.  She wanted me to help her and get things for her 24/7. She would even wake me up to press my call light for. her. The last two nights, we shared this room we talked. The one night she'd been crying. She asked me how I adjusted to being here. I knew how she was feeling. I had asked that same question when I moved here. I told her I hadn't. Living in a facility is not a normal way to live. I  just had to accept it until I found something better. I think we could have worked out our difference,s  I began to see her in a different light... I began to have compassion for her. The decision had been made. It was too late.

Why do people get such pleasure out of making fun of others?   Does it give them a sense of power? Do they feel superior to the other person?  Why?  I will never understand it  It just as easy to show compassion, empathy, and understanding. to another person.  It's a lot more positive too.

Sticks and stones. They can break bones. Broken bones will heal  The scars from being made fun of last a lifetime.

Sunday, April 29, 2018

THE GIFT OF FRIENDSHIP

I want to tell you about some friends of mine. Each of them is special. Each of them has taught me a lesson that I will take with me.

My first social worker here was Nancy. I knew from the beginning that she cared about me.Nancy always made time to talk with me.  Even after I was assigned a different social worker, Nancy's door was always open to me. She listened,  She offered advice when necessary, She fought for me, She encouraged me.  Nancy believed that I would be approved for residential placement even when I didn't.  She taught me to stay focused and determined. April 27th was Nancy's last day here. There was cake. There were pictures taken. It was difficult for me to say goodbye. I only have a few weeks left here. I am still because Nancy won't be here to ask me if I am okay.  I will always remember what she taught me. Stay determined. Stay focused,. Believe in yourself.

"I eat chicken, fish, and turkey." That's one of the first things I said to Julie, the dietician when she visited me to discuss my food preferences. I don't really remember when I began hanging out in Jule's office to talk. It just sort of happened. I tell Julie my frustrations about living here,  I run ideas for blog posts by her.We talk about life in general. She is busier now, We don't get to talk in person that much anymore., I email her. .Julie taught me not to obsess over my weight.  I try, but I am afraid I am not succeeding. The monthly weigh-ins are extremely stressful for me. She taught me not to worry so much about other people's opinion of me.  She taught me that it's okay to be myself.

I got to know Lydia, the director 0f the activities department when I began attending happy hour on a regular basis. Lydia's goal is that the residents here have fun and are happy. .Every Friday, while she is mixing drinks, Lydia's is dancing, and clapping to the music, encouraging the residents to do the same. I asked Lydia if she would make me a Caipirinha, The National Cocktail of Brazil, for my birthday. When I  googled the recipe I changed my mind because the recipe said the liquor used was difficult to find. I was afraid it would be expensive. Lydia not only got the ingredients needed to make the cocktail, she also watched videos to learn how to make the drink properly. I asked her why she would go to all of that trouble for me. "Because it made you happy. I like making people happy It's what I was meant  to do." Lyda taught me the importance of doing things to make other people happy. In return, I'll make myself-happy.

"Where ya been, Little Lady?' That was how Chris greeted me every afternoon when I returned from volunteering at the library. She no longer calls me Little Lady. She is the only one allowed to call me, Jojo T.  The truth is, even though  I hate nicknames, Jojo. T.  has grown me. Just like I don't remember when I started talking to Julie, I don't remember when I began talking to Chris either.  She walked up and down the hall carrying a laptop. I asked what her job was.  The rest is history. Chris is crazy in a good way. I see her and I smile. I never know what she is going to say. Chris taught me that it's okay to be silly. Age is just a number and that I never have to grow up entirely. Being around Chris has brought out an aspect of my personality that I never knew existed. I can be funny. .Chris and Julie are the reason I  write fairytale journals. Chris and  Julie are the reason my alter-ego, Prudencia exists. And, most importantly,  Chris and Julie are the reason I love sushi.

Thank you, Nancy,, Julie, Lydia and Chris for making my life better here. I am glad I came to this facility. If I had not been a resident here,  I never would have gotten to meet you  I consider each of you my friends. I hope that you'll come visit me. No, Chris, I will not send a limo for you.

Thank you for you for giving the greatest gift. The gift of friendship.



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Wednesday, April 25, 2018

BIRTHDAYS...NOT JUST FOR PRESENTS ANYMORE

I celebrated my sixty-first birthday recently. Last year, on my sixtieth birthday my friends, visited with a cake and gifts. My family gave me gifts as well. Friends stopped by throughout the day with birthday wishes. It was a fun day.

This year was much more low key. .Very few people came by. There were gifts, but not as many as last year. That's the way I wanted it.

This birthday was not about a cake or gifts. This birthday was a time for reflection and giving thought to how I want to be remembered. In 2013, I wrote a blog post titled  My Legacy.  https://confessionsofadisableddiva.blogspot.com/2013/03/my-legacy_18.html  In the post I talked about being remembered for my Bianca Bear stories. I said that 50 years from now I hoped that children would still be reading and learning from Bianca Bear. Bianca Bear as well as my Diva Blog were and are a part of my legacy.

I became an advocate for people living in long-term care facilities. I hope I raised awareness concerning conditions in nursing homes. 100 years from now I hope that no one with a disability is warehoused solely because they require assistance with Activities of Daily Living. I have been given a second chance. In six weeks my new life will begin. Not a day goes by that I don't thank God for giving me this opportunity. I  realize how fortunate I am.

I hope I am remembered for my kindness and generosity. I would do anything that I could to help anyone.  I am always giving things away. It makes me happy to buy something for someone. I do not like to see someone upset. I want to try and fix whatever is making them unhappy.

I hope I will be remembered as someone who tried. I have tried to live the best life I could.  I have made a lot of mistakes. The important thing is I did not give up. If I had given up,  I would not be at the place in my life that I am now, Preparing to leave this facility.

My legacy. Writing. Kindness, Tenacity.  I could not have asked for a better gift.












Saturday, April 14, 2018

WELCOME HOME

"Welcome to our family.  We're so happy that  you want to live here.." With those words, the staff, as well as my housemates, welcomed me into what will be my new home.  The aides who will be caring for me introduced themselves to me./ They shook my hand.  I was overwhelmed.  It was at that moment that I knew everything was going to be okay.

I will be sharing a ranch-style house with two other women around my age. We each have our own room. My room is big with plenty of closet space. There is a common living room and we will share the kitchen. The bathroom is big. It has a door. No more privacy curtain for me.

I knew I was going to live in this house before I toured it.
The house is in a good location for anyone who may want to visit.  I hope I have lots of visitors. If I want to take Call-a.Ride so that I can be totally independent rather than having one of my aides drive me to my destination it is in their area of service as well.

My housemates and I are free to do our own thing.  I can have my meals when I choose. We are not required to eat together. It will be like living alone but with the staff there to assist me.  My housemates and I have one very important thing in common. All three of us want our own space, privacy, and independence.We also want to live in a quiet, peaceful environment.

I will be opening a bank account. I am looking forward to learning how to budget my money.I will be responsible for buying whatever I need that insurance does not cover.  ,  It is a goal of mine to publish another book.   if I need assistance, someone will point me in the right direction to finding the resources I need.  Everyone affiliated with the house strives to make sure that those of us living there are happy and leading the kind of life we want to lead.

The aides caring for me have had two weeks of training.  The know about CP.  I will be able to tell my aides how best to care for me so that I am comfortable.  I have met two of the aides so far. They were interested in me. They treated me like a person. I choked up quite a bit the first time I visited the house. Everone was so kind. I was told I can do anything I want.  This would be my home. When I heard those words I was speechless.

It will be two or three months before I officially move in. My case manager has to get the equipment I will need to live in the house.  A transition meeting will take place and paperwork has to be submitted. I have been assured I am really moving. There is no turning back now.

Three and a half year ago I thought my life was over.  I have been given the opportunity to start a new life. I am patient. I can wait.   Wait for the day when I can finally say, "I'm home."









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Friday, March 23, 2018

My NEXT CHAPTER.....I'M READY

I finally got the call.  It has been over three months since my initial meeting with my case manager.  I had almost given up hope. I thought my profile was in the system.. I thought they could not find any agencies that were willing to offer me support. I was wrong.

My case manager had been meeting with her director as well as someone from another department discussing my case. She had not forgotten about me. My profile is now in the system

In a week or so my case manager and I will begin to be contacted by potential providers  (agencies) who have viewed my profile and are willing to support my needs. I will choose the provider I  am comfortable with.  Then my case manager and I will visit community-based housing.in my chosen locations. I will have the opportunity to spend time in my perspective home before making my final decisions.  I can see a light at the end the tunnel. I am almost free.

Everyone is happy for me. Both at this facility and on social media. Everyone. has been so supportive. Your messages have been overwhelming. Today the woman from the state, who forced me out of my home over three years ago,  came to this facility. I ran into her by coincidence. She knows the first social worker I'd met with last fall  She was aware of everything.  She asked me if I was happy to be getting out.  I replied that I am. She said that she was happy for me/She wished me well. It felt like she was giving me her seal of approval.  I appreciate her positive response.

You, my, readers, know what is important to me. Having my own room, not having to wait as long as do here to get the care I need, a bathroom with a door on it, and. a peaceful environment. Just being in a house again will mean everything to me.

There are so many things I want to do. My goals are to write my column for The West End Word again and to find a way to publish another book.

I worry about how everything will work out. I have faith that everything will be fine.

My next chapter is about to begin...I'm ready.







Sunday, March 18, 2018

A PICTURE IS WORTH 1,000 WORDS

This illustration was done by artist Mitchell Toy of Melbourne Australia. Columnist Rita Panahi shared it on her Facebook page. This illustration has the disabled community talking.

They say the illustration is ableist. The term ableist refers to an individual who discriminates against someone with a disability in favor of someone who is able-bodied.-.

Stephen Hawking was a physicist, a lecturer,, and an author. He explored black holes and other mysteries of the universe. He was a husband and father. Stephen Hawking focused on his work, not his disability.

This illustration is a tribute to Stephen Hawking., a great visionary and scientist.

 Some people think that the message of this illustration is that when we die and we are free of our mobility devices,  then and only then, will we be whole and equal to people in the non-disabled community. .I do not view this illustration that way. In my opinion, this illustration has a very positive message

I have had to depend on other people any entire life. I have used a power chair since I was sixteen years old. I appreciate the people who care for me.  I would not have any life without my power chair and caregivers. As much as appreciate the people and technology that allows me to function, depending on them can be a pain,  I wait a lot for my needs to be met. Outings have scheduled days in advance. .I would rather be able to depend on myself.  I'd love to be spontaneous.

I am not less of a person because I have a disability. Neither was Stephen Hawing. The illustration does not diminish in any way his brilliant discoveries and accomplishments. All it means is now that he has entered the Afterlife, Stephen Hawking can walk and speak without the assistance of a power chair,, a computerized voice or, a caregiver. He is free to go and do whatever chooses. He is on his own again. I believe that is what Mitchell Toy was trying to convey in his illustration. I do not believe he meant to detract from Stephen Hawing's great accomplishments or discriminate against anyone.

Sometimes a picture is just a picture

Rest in Peace, Mr. Hawing, Your legacy lives on.


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