THE BIG 6-0

When my mom turned fifty. I was twelve. I thought she was really ancient. In a few days, I will be celebrating my sixtieth birthday. I was wrong. Fifty is not that old after all.

I have been thinking about the significance of this birthday// What makes it different from all of my other birthdays?   

Well, for one thing, I am letting myself eat junk food my entire birthday week. All the cookies, cake, chips and ice cream I want. When the week is over, it will be back to salad and fruit. Until then, I am having a great time.

On my fiftieth birthday, I told a friend how much I disliked turning fifty. It seemed so old. She said fifty was a great age to be. She said that I should embrace it and be happy. I didn't appreciate her words then, but I do now.

That's what's different for me about turning sixty. I will embrace it. I will be happy. I want to have fun. I want to laugh.  I have always been afraid of embarrassing myself.  I finally understand that life is too short to worry about what other people think.  As long as I know that I am doing the best I can, that's all that matters.  During her Believe Concert Cher said, "It's really fun to be old and stupid."   She was right. Living in a facility will always suck.  As long as I have people in my life who make me laugh and allow me to be silly sometimes, I think I will be okay.

The best gift anyone can give me is to visit me. I get very lonely here. Having visitors on my birthday would mean a lot to me.

This birthday is about being positive. It's about looking forward. It's about being hopeful.

My sixtieth birthday is going to be awesome. I cannot wait!!

THANK YOU FOR BEING MY FRIEND

When I was growing up physical therapy was torture.  In elementary school, the physical therapist did not care if the stretching she was doing to my limbs hurt/ The woman would tell me that the stretching did not hurt.  I wondered how she knew. That was the attitude of all of my PTs in the 1960s. They were doing their job. I was getting my therapy. That was all that mattered.

In 1970, when I was in the 8th grade, a new physical therapist began working at my school. She was the first physical therapist to ever say she was sorry if she hurt me while bending and stretching my arms and legs.   Her words meant a lot to me because I knew she wasn't just saying it. She was genuinely sorry that the stretching hurt me. Her name was JoAnn. too. We both spelled our name differently. but I think it was a sign of the friendship that was to come.

When I met JoAnn she loved gothic romance novels. Her favorite author was Victoria Holt. It wasn't long before I was reading them too and dreaming of moving to England to marry a rich, handsome man and live on his estate. We'd talk about the characters and plots. When I was young, those books were the coolest books I had ever read. Those books came with me when I moved here. I couldn't bear to part with them.

JoAnn did my hair and makeup on the day of my prom. The night itself was a disaster. My date and I had nothing in common. My prom was special because JoAnn made me look and feel like Cinderella for a night. 

One year, on my mom's birthday, JoAnn and my eighth-grade teacher, invited me to go to a John Denver concert with them. My mom could not believe that I  would consider going out rather than celebrating her birthday with her, but that's what I did. We had pizza at JoAnn's house before going to the concert. It was a fun night. In case you're wondering,, my mom, celebrated her birthday with my brother and his family. And, eventually, she forgave me.

We lost touch for many years. After I contacted her daughter on Facebook, JoAnn and I began emailing each other. When we finally met for lunch it was as though no time had passed. We talked and laughed just like we always had. Our friendship was proof that you don't have to see each other every month to have a bond with a person. You can pick up where you left off no matter how much time has gone by. 

JoAnn was with me the first time I saw Sonny and Cher in concert. She had gotten me a cardboard cutout standee of Cher from a record store. That Cher cardboard cutout stood in my room for years freaking people out.   She did all she could to try to arrange for me to meet Sonny and Cher.  I think she would have driven me anywhere to meet them. I wanted JoAnn to be with me again in 2014 when I saw Cher for the last time. Three weeks before the concert, I sprained my knee. I was sure that I would not be able to go. JoAnn called me when I was in the ER awaiting news on my knee. She assured me that I would go to the concert and we would have a great time.

The morning of the concert, after I found out we would be meeting Cher's BFF, Paulette. I asked JoAnn to get gifts for Paulette to give to Cher. When I talked to JoAnn later in the day, she told me she had googled Cher to help her decide what to buy. The reason I  chose the photo in this post is that Paulette is holding the beautiful flowers and box of candy JoAnn chose for Cher. She was right.  We had a great time.

The first time JoAnn came to see me here. I cried and told her how much I wanted to go home. She said to me that Cher was a good role model for me because if Cher found herself in my situation she'd find a way to make it work. A few days later she emailed me. At the end of the email she had written, "WWCD?" I knew what she meant.

I learned several weeks ago that JoAnn had passed away. it is hard for me to believe I will never talk to her again.

I love my brothers very much. When I was fourteen though, all I wanted was a sister. I guess it's a girl thing. I would ask JoAnn repeatedly if she could please be my sister. She would explain to me repeatedly why that was not possible. The time we spoke I reminded her of what I asked her all those years ago. The last thing she said to me before our conversation ended was, "I'm your sister, okay?"

Thank you, JoAnn.  Thank you for being my friend.

I HAVE CEREBRAL PALSY

"What do you have, MS?" This is the question I am asked the most by a new aide. New aides often assume I have Multiple Sclerosis because that is why many of the younger residents are here. 

New aides should be given more information about the residents they care for. The only thing they may have been told about me is that I  use the sit-and-stand stand lift and I need assistance in the bathroom. Sometimes they need to be given background information. It is up to me to educate them about my CP.

Cerebral Palsy is a disability caused by the brain being damaged or not properly developed.  Damage can occur before, during, or shortly after birth.  Cerebral Palsy impacts a person's movement, coordination, and balance.  In some cases, a person's speech is affected.  

New aides tell me to relax when they are dressing me.  I have Spastic Cerebral Palsy in all four of my extremities.  The spasticity makes my limbs tight.  It is difficult to move. A new aide makes me nervous. That makes the situation worse.

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

 I am one of the 17 million Americans who have Cerebral  Palsy. It's not a disease. You cannot catch it. It is a disability. It would be helpful if this facility gave new aides more information about the people they care for. I will continue to try and educate the aides who care for me. Some will listen, Some won't. I will keep trying.

I look forward to the day when we won't need to raise awareness. The day when no one will care what someone's disability is. 

March is Cerebral Palsy Awareness Month.  March 25th is Cerebral Palsy Awareness Day. Wear green to show you support Children and adults with CP.  

For more information go to http://ucpsdfoundation.org/

A HUMBLING EXPERIENCE

Being on Medicare/Medicaid is a very humbling experience. It is difficult for my family because they are now responsible for whatever bills my insurance will not pay for.

 I loved to go out and have a drink and a good meal every weekend. I did whatever I wanted to do. I didn’t think about money. I was spoiled.

I have always been physically dependent on caregivers. I learned quickly, when I moved here, that my needs may not be as important as the needs of another resident. I am not the most important person anymore.

 I have become financially dependent as well. I worry that I have become a burden to my family because they have to pay for the things I am unable to pay for. I know it is not fair to them. I cannot earn much, but I am trying to get writing jobs. I make calls, people express interest, I follow up with another call. I am told someone will get back to me, but the call never comes.

I have stopped going out. I don't use my phone much. I am trying to do everything I can to save money.

My chair is very old. I worry it will stop working I know residents who have been waiting more than six months for parts and chairs. The government does not;t think residents of nursing homes need power chairs. It sucks if you have to be pushed around because your power chair is not working. Power chairs mean freedom to those of us who use them.

The dentist that comes here does not x-ray a patient’s teeth. This concerns me because I had issues years ago as a result of my teeth not being x-rayed every year. If I want good dental care my family will have to pay for me to see a dentist. Oral hygiene is not a priority here. There have been times I have had to fight to get assistance with brushing my teeth. I am not proud of it, but I do what I have to make sure my needs are met.

What happens when the proposed state block grants run out? If all the people with disabilities needs have not been met,? Will they just be out of luck?

I am sure the legislators who want to cut services have never been physically or financially dependent on anyone. They have no idea how degrading and demeaning it is. It makes you feel worthless because it lowers your self-esteem.

Click on the link for the latest information from  The Consortium For Citizens With Disabilities, an organization that seeks to ensure that the 56 million disabled Americans have what they need to be fully integrated into society. The CCD  is seeking to protect. Medicaid and the Affordable Care Act, http://c-c-d.org/rubriques.php?rubpage=42 from proposed budget cuts/

I have known many people who are on Medicaid. I thought it would never happen to me. Now, it has. It is a very humbling experience.

I'm still here. I will not give up. .Like all disabled, Americans, I will keep fighting for my rights. I will keep fighting for the kind of life I deserve.

SAY WHAT???

My voice It is the one thing about me that works well. I am blessed.  Some people with CP have difficulty communicating. Unless I am excited or upset people have no trouble understanding me. That was not the case last week.

I lost my voice due to seasonal allergies with post-nasal drip. I was told it was the post-nasal drip that was irritating my throat causing me to lose my voice.  It certainly was irritating, but not just to my throat.

My voice became a high-pitched squeak that was funny and annoying at the same time. I could still make myself understood. The next day, however, was a completely different story. My voice was gone. When I tried to force myself to talk my chest hurt. Nothing came out but an occasional akin-alien-like noise that frightened people. It was embarrassing/, It was also frustrating. I can't write. I couldn't make myself understood by writing things down.  It was tiring having people repeatedly ask, "What did you say/?" Or say, "I am sorry, but I can't understand you, " Then they would leave the room not caring about what I was trying to tell them.

I often feel powerless here. I feel like no one is listening.  Nothing changes.  There are residents here who need more care than I do. I  I know I am a low priority. I need to use my voice to make the staff aware of what I. need.   I need my voice to make sure  that I am not forgotten

Thankfully, the meds worked. My voice is back to normal.. I will never take it for granted again. I   have a new understanding of the frustration that people who have difficulty communicating experience on a daily basis. It's hard. People don't want to take the time to listen. 

People with disabilities need their voice, both literally and figuratively. We don't want to feel powerless and forgotten.  Having a voice empowers you. Speaking up for what you need ensures that you won't be forgotten.

Speak up. Use your voice!





  

DEAR MR. PRESIDENT

I am one of the 56 million disabled Americans in this country. I am scared.

I began to be afraid when at the start of your campaign, you mocked a reporter with a physical disability. I wondered how anyone could be so insensitive. I wondered if you thought about the message you were sending. The message I got was that people with disabilities are not worth respect, but instead, it's okay to laugh and make fun of our physical differences and limitations. 

I am scared that the Disability Integration Act is dead. The act that would have given hope to people like me, who have been forced to live in nursing homes. I hope that we may someday get our lives back. Hope that we will be part of our communities again. No one should be penalized and placed in a nursing home because states won't pay for the services necessary to keep them in their homes. Nursing homes are for the sick. They should not be used to warehouse people with disabilities. Nursing homes are understaffed and the staff that is working is extremely overworked. These two factors affect resident care, not in a positive way.

I am scared that cuts to Medicare and Medicaid will limit my freedom. I use a  power chair. Medicare doesn't think residents of nursing homes need power chairs. It can take up to six months or longer to get chairs or parts for chairs using Medicaid. My chair is very old. I have not gotten a new one because I don't want to have to depend on other people to push me around. That is just another way of limiting my independence.

I will never be able to support myself.  My family helps tremendously. They see that I have what I want as well as what I need. I want to be able to pay for some of my expenses myself.  That's why getting a job. is so important to me. I am labeled severely disabled. The Department of Vocational Rehabilitation has deemed me unemployable. Insurance won't allow me to earn much. I won't let that stop me. I know that I will get a job. The question is not if, but when. 

I hope that you will create jobs as well as bring jobs back to the United. States. The revenue from those jobs can be used to help fund Medicare and Medicaid. Disabled people cannot afford to lose funding to support services we need to live full lives.

I hope that you will remember that we are people. Please don't forget about us. 

I am praying for you and our country as you begin. your term in office. 

TINY SUPERHEROES

Robyn Rosenberger didn't set out to do anything special. She just wanted to make a superhero cape as a birthday present for her nephew, She wanted to make him feel cool and special.  She never imagined that the superhero capes she'd made for family and friends would turn into something much bigger. And, help so many

Robyn sent superhero capes to a little girl named Brenna after reading a blog about her. Brenna had been born with a rare and severe skin condition. Robyn also sent one to  Brenna's brother.  Out of that simple gesture of kindness, Tiny Superheroes was born. https://www.tinysuperheroes.com/
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Robyn's superhero capes have helped children battling serious illnesses like cancer and disabilities. like autism.  When a child wears a cape they feel empowered. They have the courage and strength necessary to face whatever challenges they may encounter. The cape is a symbol of hope to a child. Or, maybe a child just needs to know how awesome they are. Robyn has a cape for them too.

In the first year, 4,000, capes were sent out. Superhero capes have been sent to all 50 states as well as 16 different countries. That is amazing when you remember Robyn began making superhero capes as a hobby/ 

You can help by nominating a child you would like to have received a superhero cape. All you need to do is submit their story. Take a minute to read the stories of the children who are on the waiting list to receive a cape. You may decide to sponsor a deserving child. 

If your child becomes a member of Tiny Superheroes, each month they will receive a mission to complete. Upon completion of their mission, they will receive a patch for their cape. how cool is that?

It is about bravery, courage, hope and being proud of who you are.

Get involved. Read the stories. Sponsor a child. Nominate The Tiny Superhero in your life. Make a difference. You'll be glad you did.