I CHER-ISH MY MEMORIES

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 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's 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 to see the stage again.

When  I saw the photo Cher sent me, these 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."









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DO YOU SEE WHAT I SEE?

The most upsetting thing I have witnessed since moving to this facility was when I saw 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 floormates. 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.  The staff is just here to do a job.  They don't have time to listen. They don't have time to be compassionate. Some of the aides are tired and overworked. They never complain. They come to work and do their job because they know we all depend on them. 

One day, while I was waiting for call-a-ride, 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 been much of a temptation. I knew they were not going to make it.  I am sure, they knew they wouldn't make it. I understand why they 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 know how lucky I am to be able to articulate my thoughts I can speak up for myself. I can make my wishes known. Many residents cannot speak up for themselves.  

I see. I pray for those who are not as fortunate as I am. I  am grateful. 

DUPED

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 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 didn't bother me because new staff members were always there. The person didn't tell me their name or show me any identification. They wanted to ask me a few questions. 

The woman saw me 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. 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.   I was mortified. I am sure this was the first time someone has been interviewed on the toilet. The interview took five minutes. 

I went downstairs to find out who the staff member was. No one knew. Someone heard my conversation and said the individual I described 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. The woman should have left immediately when she saw I was on the toilet. 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 to see someone's ID before speaking to them. Never assume anything. If this happened to me. It can happen to you. 












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ADVENTURES IN ELEVATORS

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 a 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 chairs 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.

STOP, HEY, WHAT'S THAT SOUND?

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 B52s and Culture Club kept me company. Many times, when the fire alarm goes off,  it's because someone pulled it.  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.

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.

Residents yell for spouses who are long gone. Alzheimer's is stealing their minds. 

The dining room can be loud in the mornings. The staff talking. Dishes clattering. Residents talking. A cacophony of sound.

All of the sounds I've described, positive and negative are just a part of life in a nursing home.

Hear that? The med cart is coming.