Sunday, May 22, 2016


My rights have been violated by the State of Missouri
My brother has been working.tirelessly trying to find out the name of the individual who interviewed me while I was on the toilette. He spoke with someone  who works for the state. This person is withholding the the name of the individual. They lied to my brother, telling him they didn't know the individual's name,when in fact, they do. Tomorrow, my brother will be filing a police report. A warrens will be issued for the person's arrest. We want to find the person who interviewed me, so charges can be filed against them too. 

When a visitor enters this facility,, they are required to sign in and sign out when they leave. The interviewer did neither, The interviewer should have been  escorted to my room by a staff member. They should have shown me ID.  They presented themselves as an employee of this facility. I had been asked similar question by staff before, so. I thought nothing of it. They were given access to my chart . I know now that my civil rights were violated. They tried to trick me..

My rights have also been violated by this facility
I have signed papers,concerning my health insurance, that I thought brother had knowledge of.  I was told by a staff member that my brother would be called. He wasn't. I was lied to again.

The administrator of this facility asked that I not blog or tell Voyce about an incident the occurred on May 11th.  That night, I was verbally and emotionally abused by an aide. I was cursed at. The aide admitted to threatening me.  They yanked my call .light from my hand, putting it out of my reach and closing me in my room. I was trapped. The nurse heard me screaming for help before the aide left, but did nothing. The aide came back after a while, gave me the call light, waning me that if I pushed the button again, they would take it away again, close the door and no one would come, The nurse finally came in, but all they asked was if had been physically abused. When said I hadn't, the nurse was not that concerned,. The nurse accused me of refusing care. She sent the aide back to my room. I  became upset. I don't feel safe at night. I am afraid of new aides.

I was told the aide has been suspended pending an investigation. I have not been told anything further. I told my brother. The facility has never mentioned the incident to him. 

The administrator wanted to handle this "internally." Under the First  Amendment, I am free to blog about whatever I choose. The administrator  was trying block my right of free speech. I am speaking out because I don't want any other resident to go through what I did.

The head of .social services told me I don't always stick to the facts in my posts. I write my perceptions. I write my reality. I  speak my truth.  That is all that matters.


Friday, May 20, 2016


Yesterday I received a personally autographed photo from Cher.  The photo arrived a week after Cher gave me a shout out on Twitter. After receiving both the shout out and the photo, my first thought was, "I wish Mom was here." 

Six years ago, when I got my first Cher Tweet, I started to call out, "Hey Mom, look at this." Then I remembered. She wasn't in the next room, I was alone in my house. As happy as I was, that realization made me sad.

Because of  Cher I have fond memories of times I spent with my mom and grandma. .

Every time I would buy a new album, my grandma would listen to it with me. She was in her eighties, I am sure she would have rather listened to something else, but she did it because she knew it made me happy. She watched Sonny and Cher too. She may have fallen asleep during the show, but she did her best, so we could talk about the show the next day. She thought I was a little nuts, but in a good way.

The last time I saw my grandma was  the night after I had seen Sonny and Cher in concert. She was in the hospital. I didn't realize how sick she was. She listened as I prattled on. Reciting Sonny and Cher's dialogue word for word. Had I known that would be the the last time I'd see her, along with telling her about the concert, I would have told her I loved her one last time. I would have  thanked her for being my best friend.

When I'd finished reading Cher's book, The First Time, my mom wanted to read it. I told her Cher used profanity a lot in the book.  "Oh for heaven sake, You don't think I've heard those words before?" Mom read the book. She laughed.

I'd buy tee shirts at Cher's concerts I didn't want anything to happen to the shirts, so I never wore them. Each concert, as we made our way to the merchandise area this would be our conversion.

Mom "You really don't need another shirt. You never wear them."

Me:  "Yes I do. It's memorabilia."

Mom: " They are expensive."

Me:  "I have money."

I won't tell you how old I was  when we had this exchange, but in 2014, as I  bought my shirt, I missed it.

When fans blocked my view, during The Farewell Tour, my mom told the security guard,"We paid good money for these tickets and my daughter can't see.." When fans still didn't move, Mom got up and began whispering in my ear. She described what was happening onstage to me until I was able see the stage again.

When  I saw the photo Cher sent me,theses memories and more came back to me. Memories shared with the two most important women in my life.

I hope my grandma and mom were looking down on me yesterday. I hope they heard me whisper,"Hey Mom, look at this."


Tuesday, May 17, 2016


I have seen a lot since I have been here. Some of it has been good, some of it hasn't. All of it unexpected.

The worst thing I have seen since moving here is seeing a black body bag being rolled to the elevator on a gurney. I tried to convince myself that I had stumbled into a bad episode of Law and Order. I knew I hadn't. I knew that the bag that was being rolled down the hall carried one of my floor mates. Someone I knew. I have seen this twice. Both times a chill ran through my body. It made me think about my own mortality.  I don't want to die here. You die alone in the care of strangers. Many of whom don't care. I know this is true because aides have told me they are just here to do a job.  They don't have time to listen. They don't have time to be compassionate. But, then, there are some aides who are tired and overworked who never complain. They come to work and do their job because they know we need them. 

One day, while I was waiting for call-a-ride last fall, I talked to one of the younger residents for a few minutes. When we'd finished talking, the resident got up and began walking down the driveway toward the exit. The sight of the road must have just too much of a temptation. I knew they were not going to make it. Deep down, I am sure, they knew they wouldn't make it. But, I understand why hey had to try. A staff member ran to get them/ They walked past me, back inside the building. The scene has stayed with me. It makes me sad. I hear aides say how they cannot wait to go home. All of us would like to go home too. We don't have a choice.

I see residents lined up in the hall waiting for their medications. Those residents who are unable to swallow pills have them crushed and mixed with pudding. They remind me of baby birds. Their mouths open as they wait for the pudding. Vital signs  and weight are checked monthly. Everything's done to make sure we're okay.

I see residents on their way to the shower room.  Just a sheet or towel covers them. When it is my turn for this ritual, I make eye contact with no one. I hope we get there quickly.

I see residents who need to be fed. I am thankful I can feed myself.

I see people who are very sick. I am blessed that I am healthy.

I see how happy residents are when family and friends visit. Weekends bring lots of visitors. Everyone is in a good mood. Residents enjoy the times when visitors bring them food. All of us appreciate special meals and treats when we get them. 

I see how lucky I am to be able to matriculate my thoughts/ I can speak up for myself. I can make my wishes known. Many residents cannot speak up for themselves.  

I have seen a lot here. Too much to put in this  post. I see, and I  am grateful. 

Monday, May 9, 2016


It always amazes me how rude able-bodied people can be to people with disabilities. Many times, they treat us as if we are not to be shown respect at all. Last Friday, that fact was driven home to me once again.

A state social worker came to see me. That, alone is not blog worthy, considering how I arrived here in the first place, 

What makes the social worker's visit blog worthy is the unprofessional and disrespectful way in which the short interview was conducted.

I was in the bathroom. There was a knock on my door.I thought it was my aide coming to help me. The door was opened by a person I had never seen before. They were not an aide, but it still didn't bother me because there are always new staff members here. They person didn't tell me their name or show me any identification. They wanted to ask me a few questions. They could see I was on the toilet, attached to the stand-up lift. "As you can see, I'm a little busy," I said. They offered to come back, but they were in the bathroom with me , I was exposed  with no dignity left. What was the difference? People are always coming in when I am in the bathroom. Inside, however, I was mortified. I am sure this was the first time someone has been interviewed in the bathroom. It took five minutes. I have been asked similar questions before.

I went downstairs to find out who the staff member was. No one knew. Finally, someone heard my conversation and said that the individual I was describing was from the state. I was told that they were holding their ID in their hand. They didn't show it to me.

I feel tricked. I feel violated too. When this individual saw that I was on the toilet, they should have left immediately. Why was it okay for them to talk with me when I was in a vulnerable position? Why didn't they show me any ID? Instead, they led me to believe they worked at this facility. 

I want to warn people with disabilities. Always ask t see someone's ID before speaking to them. Never assume anything. If this happened to me. It can happen to you .. 

.. . 

Saturday, May 7, 2016


Using elevators is a fact of life for me. My power chair is heavy so there is no other option. It takes very strong men to pick up the chair.  I remember being at a church gathering. It was announced that the small elevator was sparking and smoking. I was in the church basement. Four men carried me up the stairs in my power chair.. There was not a lot of room. I was relieved when we got to the first floor.

One year. on Palm Sunday, my mother and I got stuck in that same elevator.  Just as they were about to call the fire department, they managed to get us out. We were stuck between floors.

I remember the elevator being out of service one Friday afternoon, when I was on the second floor, at Meramec..I had to be carried down in my power chair again. That's scary because sometimes I  can feel those, who are carrying me, shaking a little bit.

The wrestling coach at Meramec  made a stick for me so I could reach the buttons in the elevator It looked like a small pool cue. It had a leather handle and rubber tip. I don't know what happened to it. It worked great  for turning lights on and off too.

When I was little, my mom and I had to use freight elevators. in department stores when  the main ones were not in operation. They were big and made a lot of noise.. I always thought this was kind of cool . We got to see parts of the store that no other shoppers did.

I have gotten stuck in the elevator here too. It happens because I have difficulty reaching the buttons I have to angle my chair just the right way. Then twist around in my chair to reach the buttons, I'm sure I look like a pretzel.  Sometimes this works. Sometimes it doesn't When it doesn't, I just wait for someone to come to use the elevator..I was stuck in an elevator with another resident . The other resident yelled for help. Thankfully, it worked..

My most recent  elevator adventure occurred last Thursday when a friend and I visited the mall. My friend also uses a power chair. We had an enjoyable time browsing in the mall's bookstore. We got a bite to eat in the bookstore's cafe.

We had to take the elevator upstairs when we were ready to leave. My friend pushed the button, the doors opened and we rolled in. The doors closed. It was at that moment we found neither of us could reach the buttons. Whenever two people in power chairs are in an elevator together, it takes a bit of maneuvering for both of the chairs to fit to allow the doors to close. It's like a very awkward ballet. Now, it was going to take some maneuvering for one of us to  get to the buttons. The elevator was quite small. We kept banging into each other, getting caught each other's chair and hitting the walls of the elevator. It seemed like an eternity, but in reality, it was only about five minutes/, My friend was able to reach buttons. We got out safely.

Elevators. Necessary. Frustrating. Never a dull moment.

Wednesday, May 4, 2016


The fire alarm went off this morning just after I returned from breakfast . It happens every other week or so. Loud beeping with flashing lights. Doors slamming. Closed in. Until the fire department gives the all clear. I sat alone in my room. The B52's and Culture Club kept me company. Many times, when the fire alarm goes off,  it's because someone pulled it. I guess they think it's funny. It don't. It scares me. I wonder if this time there really is a fire. If there is, will I make it out alive? I am on the third floor.

The first experience I had with  the fie alarm going off was on a Friday night. I was in my room the door was was closed. I heard nothing. I was afraid. What was happening?  I texted a friend. My friend suggested that I call downstairs to find out what was happening. .I did. I was told everything was fine. I was reprimanded by a nurse for calling. I was use to fire drills lasting several minutes. I did not have to wait and wonder for over an hour. It was unnerving.

My bed has an air mattress. it sounds like it is alive and breathing as it fills with air. This took some getting used to. I wondered what the strange, creepy noise was each night. When my aide puts the bed rail up the mattress deflates with a shushing sound. Until it's reset and  filling up, it is like lying in a hole.

Med and treatment carts rumble as they pass my door, They sound like small earthquakes.

Many mornings. I am  awakened by the chopping sound of the pill crusher. Or, aides and nurses talking in the hall.The squeak of the stand up lift as aides come in to get me out of bed.

Machines whirring. Oxygen hissing. All of these sounds are positive because they help residents live.

 There are the negative sounds of residents yelling for no reason. One yells for their spouse because Alzheimer's Disease has taken their mind. Another yells because they don't want to wait their turn. Yelling is scary. It makes me feel like I am in a psych ward or zoo. There is a resident who taps the walls and makes strange noises. I am an adult. I try not to be afraid, but I am. 

The dining room can be loud in the mornings. The staff talking to one another. Dishes clattering/ Residents yelling. I eat and go back to my room as quickly as I can.

This facility can be a very noisy place. I try not to let it bother me. Some days I succeed. Some days I don't. I do the best I can..