IT HAPPEND

I told my mom before she died not to get dementia. I did not want her to look at me and not know who I was. (It only happened one time. She caught herself and laughed. then she said my name.) I knew she had no control over whether or not she'd lose her memory. I asked the question anyway. In my opinion, losing your memory is the worst thing that can happen to someone.

My handwriting (printing) is not the best. It has gotten worse as I have gotten older. I love my laptop and tablet, but sometimes having to type things out is more trouble than it's worth. I rely heavily on my ability to remember things. If my memory goes I will be in BIG trouble.

It happened.

I woke up one morning convinced it was Sunday. It felt like a Sunday. The Golden Girls were on TV, a sure sign it was Sunday.

All day it was Sunday to me until late in the afternoon when I mentioned to a staff member something that is done on a Sunday. When the staff member tells me that it's Saturday. I am taken aback. I protest until  I check the day, date, and time on my tablet. It's indeed Saturday.

People have told me things I've said that I do not remember saying. Or, I remember a conversation in an entirely different way.

I have visions of being placed in the Alzheimer's unit of a nursing home.

I immediately wanted to call my physician to schedule an Alzheimer's screening. This disease that steals a person's mind runs in my family. I was filled with fear.

I was assured that what I experienced was most likely caused by stress. I did not have the beginning signs of Alzheimer's. 

Stress and Pressure. Picture a pressure cooker. Its valve is about to pop off. Hissing. Spewing its contents everywhere. Leaving a mess for others to clean up. I never want to feel that way again. Stress is a powerful negative feeling. 

My memory is so valuable to me. Stress can only affect me if I allow it to. I will not allow stress to take over my life.

I have so much that's positive in my life. This blog, my friends, I have the privilege of watching a movie to escape for a while.

Friends, blogging, and movies. My de-stressors.  

What are yours? 

Leave me a comment.

THE SPOON THEORY

People with disabilities might refuse their showers. Please do not be grossed out by that statement. I assure you our reasons have nothing to with a desire to be dirty

Using their lift, getting in their shower chair, being pulled and tugged on, during their shower, may just be too much for them some days. 

 If their disability causes tight muscles, their spasticity alone is enough to wear them out. Throw in the effects of the aging process, arthritis, changes in hearing and vision, That's a lot for anyone to deal with. For someone with a disability, it is ten times worse 

Disabled people are told to speak clearer, louder, and not to whine. Some people with disabilities take deep breaths and then push to get their words out. This takes tremendous effort. When they try to speak more clearly their words may come out louder than they anticipated. They are accused of yelling. In reality, they are just trying to be heard and understood. Exhausted, they have depleted all of their spoons by noon.

The spoon theory is a metaphor created by Christine Miserandino for the energy and ability limitations that disabled folks live with : Source: tps://girlonthegoblog.com/2019/10/20/better-understanding-disability-using-the-spoon-theory/#:~:text=The%20spoon%20theory%20is%20a%20metaphor%20created%20by,the%20day%20takes%20a%20certain%20number%20of%20spoons.

If a person's allotted spoons for the day are used up too quickly they must do something relaxing to replenish them.

I have only recently discovered this theory. It makes a lot of sense. The idea of spoons representing my energy, abilities, and limitations for a day serves as a great visual for me.

If I tell someone that I am tired or hurting the response I am usually given is to be told how much that person's hurting too. Thereby making my complaint seem trivial and not valid. 

A lot of my spoons are depleted trying to get the assistance I need while trying not to anger the other person by saying too much. 

Young people really do not care. They care about themselves, their lives, and that all-important cell phone. The Me Generation is a  selfish one.  They live in the moment. They feel to grasp that they too could become disabled. It only takes a moment for a life to irreparably altered. They too could be trying to conserve their spoons someday.

People don't understand. They don't want to understand. A non-disabled person has an infinite number of spoons. Disabled people, like myself, are not as lucky.

There are mornings when I want to just stay in bed. I don't want to go through the hassle of the day. The back and forth of being told not to tell someone how to do their job.  I do not give in to staying in bed. That is just not me.

Disabled people need to recharge. We do not need to explain. We need to conserve our spoons so that we can do the things that are important to us. We don't need to waste our daily spoons on stress and negativity.

EVIL SPELT BACKWARD

Someone told me that there are people who think I am evil. Some call me  "The Evil Lady." 

I acquired that name because I speak up. I advocate for myself. People don't like that. They don't like people who rock the boat. They want to do their job and go home.

I watched a Ted Talk given by Lizzie Valasquez titled What Defines You?

Lizzie was born with an undiagnosed syndrome. This syndrome affected her outward appearance and her vision, and as a result of the syndrome, she is unable to gain weight.

Lizzie was bullied. In high school, Someone posted a video of her on Youtube calling her "The ugliest woman in the world."

Lizzie took all the negativity that she had endured and turned it into something positive. She became an advocate for children who face bullying daily. She is fighting to get a law passed banning bullying in schools. She is grateful to the person who posted that video. That video led her to her career path, her calling.

While watching Lizzie's Teed Talk I started to think about what defines one. Was I going to allow the negative judgments made by people who do not really know me as well as the names people have called me to define me as a person?

Does my CP define me as a person?   No. my disability just is. It is not who I am.

Does my advocacy define me as a person? A little I guess. My goal has always been to make a difference. My efforts may have backfired, but my intentions were always to bring about a positive change.

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Does this blog define me as a person? YES!!! This blog is who I am. This blog is what I want to be remembered for.

I am not hurt by all the names I have been called anymore. I want to thank the people who've called me evil. You did me a favor. Because of you, I realized something that I had not thought of before.

Evil spelled backward turns into the word live. I am going to. live the best life  I can. I do not have to conform to make others happy.  Calling me negative names, and telling me negative things about myself serves no positive purpose. It only serves to heighten my depression. Negativity does not miraculously turn into positivity. 

I am so happy that I watched Lizzie's talk. I am going to picture the negative words people have said to me as a "ladder to my dreams."Thank you, Lizzie

I only get this one life. It's mine. No one else's. I want to be allowed to be myself. Warts and all.  I want to be happy I am flipping the negative word evil into the positive word Live. I can't think of a more positive word to end this post with.

Follow Lizzie on Instagram

https://www.instagram.com/littlelizziev/?hl=en

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https://www.youtube.com/user/lizzitachickita

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https://www.facebook.com/LizzieVelasquez

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https://twitter.com/littlelizziev

 

THE BEST RESPONSE

Those of us with disabilities spend our entire lives explaining ourselves. Answering questions. Advocating. Being disabled can be exhausting. being cared for by others. while greatly appreciated, is probably the most exhausting aspect of having a disability. 

We know all of our quirks. Reminding us of the negative only serves to make us feel as if there is something wrong with us. We begin to feel inferior. We know that we can be annoying and bothersome at times.

 We know how we like things done in relation to our care. Every person with a disability is unique. If two people have the same disability what works for one person may not work for the other person. Clear communication and the ability to listen and respect one another are the ingredients for a good client/caregiver relationship. 

Our caregivers have their own lives and issues. They show up, meet our needs to the best of their abilities and go home. The reality is caregiving is a job like any other job. Our caregivers are not meant to be our therapists.

If you are a friend or family member of someone with a disability, you want to help make that person's life easier, better but you are not sure how.

Here are my suggestions:

Let the person talk as much as they need to.

Listen.

Offer encouragement

(Here's the biggie.) Let them know you understand/

Two simple words. I understand. These two words validate a person's feelings. These words let the person know you are listening and that you heard them.

This applies not only to caregiving situations but to many situations a disabled person may encounter.

If they didn't get the job they were hoping for don't say, "You were too old to get the job anyway."

A more appropriate response is, "That sucks. I'm sorry. I know you are feeling down right now. Is there anything I can do to help?" 

Independent living is hard. Relying on others for our basic needs is hard. 

Be there if  we need to talk/or just vent

The best response?

I understand.

THE PANDEMIC EFFECT

How did the pandemic affect those of us with disabilities? What are the lasting effects of the experience for people with disabilities?

I can only speak for myself but I would not be surprised to learn that many of my disabled peeps have experienced many of the same issues and feelings that I have over the past year and a half.

When it was announced that there would be a two-week quarantine I thought to myself, "No problem. I can do this. I will be back at Happy Hour by St. Patrick's Day." 

When two weeks turned into months, then a year, I felt like I was living in a box. News reports of the rising number of deaths were frightening to me. I require care. My caregivers and I could not social distance. Would I catch Covid?  Would I be one of those who would be forgotten or denied care, like so many of the elderly and disabled people I read about if I contracted the virus?  My fear, anxiety, depression, and a little paranoia were amped up. to the max. I am disabled. I am on Medicaid. Would those two factors mean there were two strikes already against me?

Even though social media and Netflix were a godsend I still felt isolated. My room began to feel like a box during the winter months. I needed conversation. I needed to feel connected. I didn't.

I gained weight because I saw no end to the pandemic. I found enjoyment, comfort, and friendship in food. Make that junk food. 

Everyone gained weight during the pandemic right?. It's harder for me, or any sedentary person, to lose weight. I never want to be the reason someone hurts their backs, I have done a good job of keeping my weight down my entire life. During the pandemic, however, I just did not care.,

When news of a vaccine was announced I could not wait but. I was concerned about potential effects. The length of time it would take for me to get it. I felt horrible the day after getting the second injection. Considering what the alternative would have been it was worth it.

Nothing has really changed here yet. I still have to meet visitors outside while social distancing despite the fact that my potential visitors have all been vaccinated. I wonder if the world will have to mask up forever.

Twenty years ago the idea of a virus such as Covid would have been the plot of a sci-fi movie. For the last year and a half, it's been our reality.

I hope we never forget the lives lost, and the medical professionals who risked their lives to save so many. 

The pandemic has left me with the knowledge that anything can happen. A virus stopped our world in its tracks. Be kind. Be grateful. No one is immune to anything.  

We need to stop being so selfish. We need to care. Not only about ourselves, but about how our choices and actions affect those around us. None of us live in a vacuum.  We are all connected to one another. If the pandemic taught us nothing else it most assuredly taught us that.

 

GET MY WATER WINGS

From the ages of eight to approximately eighteen I attended Camp Daniel Boone.  A sleep-away camp that was located near St. Charles, Missouri.

I went to the camp with two of my friends.  I remember getting on the bus, and not wanting to go.  I never liked to be away from home. (Let's be real. I needed a lot of my parent's time and attention. They needed and deserved the ten-day break my attending camp gave them.)

My mom thought that if I went with friends, I would have a good time. She was right.  The problem was the camp director had other ideas. He thought that the camp was a good place for me to make new friends.  

More often than not I was put in a cabin with girls I didn't know.  I only got to see my friends at mealtime or during the evening programs. I was so homesick.  The camp director would end up calling my parents to pick me up.

When I was in a cabin with my friends I had a great time. I was (and still am) shy.  The camp director's focus should have been on making my experience at camp a happy one every year. I could have made new friends while being with my old friends. 

 I enjoyed making crafts and nature walks.  It didn't matter that my effort wasn't very good; I still liked trying to make whatever the craft was. The camp was the first time that I observed a frog being dissected. I felt sorry for the frog. What had he done to deserve such a fate? The camp was where I heard Poe's The Telltale Heart for the first time. Pretty creepy for the wimpy little girl I was back then.

We slept outside under the stars in sleeping bags for one night during our ten-day stay. Ahh, the memories. The ground was cold and hard. I woke up with leaves in my hair. The outhouse? I used it once. That was enough. I waited until we were back in the cabin the next morning. 

I brought home a souvenir from camping out.  My mom found a half-dead tick in my hair while she was washing it after I got home. She had to cut my hair to get it out. The next year my mom sent a note asking that I not be made to sleep outside. I was not the only one. As it turned out that other kids felt the same way that I did. We camped out inside from that time on.

I was riding a horse with a counselor when the horse stepped into a hole. We both fell off the horse in slow motion. Gotta give props to that counselor. He did his best to keep me from getting hurt. They did not make me ride the horse after that.

I was a little fish. I loved swimming. Put a plastic ring around me and I was off paddling. (I also probably swallowed half of the water in the pool, but that's not the point.) I loved paddling around, putting my face in the water to blow bubbles, and seeing how long I could hold my breath with my head under the water. 

My favorite memory of being at camp is getting to use water wings. I was swimming like everyone else with water wings around my arms. The water wings gave me such a sense of freedom in the water. I had never experienced it before and would never experience freedom like that again no matter how many inner tubes,  life jackets, (the worst), or plastic rings I would try in the future. 

I may not have liked everything about being at camp. Getting to use wings meant; everything to me.