Social Isolation

Hello, everyone. This post is long overdue. How are you dealing with this Social Distancing? This is a very difficult time for all of us and I felt like I needed to share how I am feeling and let you all know you aren’t alone.  

Fortunately, or unfortunately, depending on how you look at it, I live alone. From a distancing perspective, this makes it easier for me to isolate to stay healthy. However, it also has a lonely effect on me from a lack of social interaction. I am a people person, for the most part, and social media helps in that way, but to be honest, it doesn’t replace personal face to face interaction. Recently, I was going stir crazy from not going anywhere and not having any face to face interaction. I started to get depressed over this, so I went grocery shopping for food yes, but mostly for some face to face interaction. It felt good to get out and see other human beings and to just be able to say hi to someone else in person.

Some people with disabilities are not able to get out to see other people, even on a limited basis. Having no personal contact can take a toll on anyone mental and emotionally. It’s important for these people to reach out to family and friends and let them know how they are feeling, or to have people reach out to them, to let them to see how the disabled person is doing.

Because of our current situation as a nation, it is recommended that we self- isolate, but please, stay in contact with friends and relatives whether they are disabled or not. Some people with disabilities might not be able to reach out for help on their own, so if we keep in touch with these people through social media or simply the telephone this will help them to know that they are not alone. This will allow the disable person to express how they are feeling and be able to ask for help. It’s also okay for the person calling them to ask if the disabled person is okay because the person might feel like a burden for asking. PLEASE look out for each other. It’s important more now than ever.

I would love it if you would share how you are feeling, what you are doing to keep busy, and any tips you have for getting through this. You never know, your tips might just be what someone else needs to get through this trying time.

Someone Like ME

When you are a disabled kid living in a small town, the chances of seeing someone else with a disability is rare. The only time I saw someone like me was when I went to the hospital for therapy or doctor’s appointments. This was both an advantage and a disadvantage.

By not being around others with a disability, I really didn’t notice I was different. I was occasionally teased, but generally, I was accepted by my peers and included in their activities. However, there were times when I did feel left out, like when they would go for a bike ride and I couldn’t go because I didn’t know how to ride a bike. I did learn how to ride a bike later, thanks to neighbor friends teaching me. This made my father cry because he always wanted me to be able to ride a bike. My father tried to teach me a few times, but I got frustrated and gave up.

 It wasn’t until I got into high school that I saw someone else with a disability. He and I both had Spina Bifida and were both able to walk. We didn’t have any classes together, but we would say hi if we passed each other in the hallway.

It really wasn’t until I was an adult that I was around more disabled people. After graduating from high school, I worked at a school for multiply handicapped children (that was the terminology at the time) and I also worked at a local Arc (formerly A.R.C.- Association for Retarded Citizens) over the summers. While working at the school, I became friends with a co-worker who was deaf. We would hang out occasionally after work or on the weekends. After he left the school, I didn’t really hang out with anyone with a disability.

 Years later, I ran into someone else with Spina Bifida. We knew of each other because my parents had counseled her parents when she little, but we never really had the opportunity to get together.

After reconnecting, we would talk on FB and began to become good friends. Once in a while, I’d go over to her house to visit. In the beginning, when I would go over to her house, I felt very uncomfortable. I had never been around someone in a wheelchair and wasn’t sure how I should act around her. Should I open doors for her? Should I push her? What do we talk about?

After visiting a few times, I confessed I had felt uncomfortable around her because of the wheelchair. She told me I shouldn’t feel uncomfortable around her. She said if she needed help with something, she would ask, but other than that, she would prefer to do what she could on her own. 

I have read things on FB and watched videos on YouTube where disabled people are trying to find a place where they belong. Some have birth defects and other have become disabled later in life due to accidents or injuries. For people like me, who live in the middle of nowhere, social media has opened up the world to us. It helps us to be able to talk to other people with a disability, especially the same one we have. Being able to talk to someone who has the same issues allows us to de-stress or vent to someone who gets it.

We all just want to fit in no matter our circumstances. However, there are certain things that only someone else with a disability will understand. Thanks to social media, it is much easier to talk to others about common issues.

Have any of you ever felt left out due to your circumstances? Please feel free to share your experiences and tell us how you dealt with it.

           

My Fear Of Public Speaking

Although this is not technically a disability, it can be very paralyzing for some people. What am I talking about? Public speaking, which I have heard is the #1 fear people have. It is feared even more than death! I can believe that. I have always had a confidence issue and public speaking is very hard for me. Thankfully, it is rare that I have to do it, but when I do, I get extremely nervous. I stutter and stammer, do a lot of and um-ing and ah-ing to the point where I lose my train of thought and sometimes freeze. The same thing has happened in the past when I have sung in church.

Recently, I was asked to give a presentation on some of my interests by the director of our local Office on Aging and Disabilities, for their Disability Awareness Day. Although I was apprehensive about doing it, I decided to push myself out of my comfort zone and said yes. Now it is a matter of organizing my thoughts and developing them into a cohesive manner.

I was talking to a friend of mine about this, and she suggested that I look into an international organization called Toastmasters. This organization brings people from different walks of life together and helps them develop and or improve their public speaking skills. This is done by members/participants listening to each other’s speeches on a variety of subjects. At the end of the meeting, constructive criticism is given by selected members to allow people to get information on what they need to work on to improve their communication skills.

I enjoyed attending the meeting last night. Everyone was very welcoming to me, cordial to each other during their speeches and were respectful toward each other during the critiquing part of the meeting. I look forward to attending more of these meetings to work on improving my public speaking and communication skills to help me be more at ease when it comes to interacting with people. I will add more posts on this subject as I go through this process. Has anyone else done any public speaking? How did it go? Can you share any tips with us?

Social Discrimination

 U.S. Government and Social Media

Wow. I just read an article on Facebook by the site The Mighty, a site to inform and empower those of us with disabilities. The article I read stated that the government now wants to look at our social media pages as a way to determine whether we are “disabled enough”. This is horrifying.

As I read this article, I began to think about what I post on social media. I post pictures of myself taking part in races with my handcycle. I love using my handcycle. It keeps me physically and socially active. It also gives me a sense of accomplishment and pride, which everyone likes to feel. Am I going to have to stop posting these pictures for fear of losing my disability benefits?

I agree that the government needs to monitor who gets Social Security Disability, but as a person with a disability, I find this proposal very invasive. Just because we are disabled doesn’t mean we have to stop living. By looking at my social media page, it looks like I am quite active and have fun, which is true. However, what my social media page does NOT show is now badly I hurt after physically exerting myself. The reason I do this to myself is to keep myself active in all ways so that I don’t become completely isolated from the world around me.

A couple years ago, I was sent several packets of questions by Social Security asking me question about my functionality. One of the questions wanted me to explain what I do from the time I get up to the time I go to bed! This varies from day to do depending on how I feel and what I have planned for that day, (just like everyone else.} What this question didn’t take into consideration was whether I woke up hurting, whether I might be nursing a pressure wound from simply walking too much one day or the fact that I am mentally drained from someone having to explain something to me yet again because of my learning disability.

I have talked to and become friends with people on Facebook who have similar disabilities to mine, and others who have disabilities different from mine. We all have different abilities and disabilities. This applies to non-disabled people as well. Don’t judge us on what you see on our social media pages. Get to know us and what we go through on a day to day basis before you judge what we are and are not capable of.

As for me, I am only able to stand for about 20 minutes, while hanging on to something, because my balance is off and my muscles start to ache. If I overdo it, my back KILLS ME by the time I am able to sit and relax. This pain can last anywhere from a half an hour to days depending on how much I over exerted myself. Being on disability enables me to do what I need to do and have the ability to take care of myself.

Judging people on the basis of what they see on social media is discriminatory. Not all disabilities are visible and should not be judged as such.

Has anyone else heard about this? Have you experienced this kind of thing yet? Let’s share any information we come across on this subject so we can fight this discrimination!

This is a blatant form of discrimination and it needs to be addressed. I would like to encourage everyone, including individuals with disabilities, their caregivers, even their case workers to contact your state and/or federal government representative to voice your concerns on this subject. Below you will find a link to the article I got my information from and also a link to find your states representatives.

Elected Officials

Let Me Fail

As we grow, we learn to do new things. Sometimes we get it right the first time. Sometimes we don’t, and that’s okay. Failure is all part of learning. Learning can be especially difficult for some individuals with a disability. However, being disabled does not mean we are incapable of learning, we just need a little more time and patience. Slowing down and explaining things to someone with a disability will help them understand and retain the information and process it better. It has been proven that everybody learns in different ways. Some are visual learners, some are auditory learners, and some are more hands on, or a combination of these.

A FB friend of mine had gotten a cubical shelving unit for his bedroom that needed some assembly. He had wanted to put it together himself by looking at the directions carefully. At one point, his father came into the room and saw that he was having some difficulty. Instead of coming in and offering some help, his father basically said, move out of the way and he went ahead and put it together instead of taking the time to show my friend the right way to do it and working on it together. This left my friend feeling “broken” like he wasn’t smart enough or good enough.

When I was taking the LAST course to finally get my associates degree, I had major difficulties because it was a math class, which has always been my worst subject. I went to tutoring, I met with the professor before and after class, I consulted with the Disabilities Coordinator at the college, all to try to get through this class. I would complain to anyone who would listen.

One day, when in college, I was supposed to take a test. My anxiety level was through the roof! I got to class early that morning, so I could do some last - minute studying. Soon after I got in the room, the professor came in. He could see I was upset and asked what was wrong. I began to cry as I told him about how stressed I was over the class. He asked me if he could tell me something. I said yes. I figured he was going to say what everyone else has told me, that I needed to just try harder etc, etc. Instead, he told me that he admired me. He said, “Here you are, in your 40’s with a disability, still trying to get your degree and have not giving up.” “I commend you for that.” This meant the world to me. He reassured me that I WAS in fact passing the course and that I would be getting my degree.

Having someone take their time to help us learn something new means everything.  It helps us to learn new things number one, but it also helps to boost our confidence and sense of pride. This can be invaluable to someone who has difficulty learning, so please, be patient with those of us who struggle to learn, it means the world to us.

I would like to encourage anyone who would like to, to share their own similar experiences, so we can all learn how to handle this sometimes, touchy subject.

                         

Put Down Your Rock! - Re-post

I first posted this to my blog back on December 1, 2015. I had SO many people tell me how much it helped them I was overwhelmed. I would like to share it again for those who may need some encouragement. I hope you all enjoy it and possibly find peace in something you may be struggling with.

Thank you.

As we go through life, regardless of whether we are disabled or not, sometimes things happen that bother us. It could be something someone said to us, the way someone acted toward us, or maybe it was the way someone made us feel.  These things can have a negative effect on us which can be physical, mental or emotional.

 I am pretty good about letting things go and moving on. However, there have been a few things that have bothered me and I just couldn’t let them go no matter how hard I tried. Every time I saw a certain person, or if I am in a similar situation where the incident occurred, it brought back memories of a not so nice time or event in my life.

 A few years ago, I took a very interesting class. One day our teacher asked us to bring in a rock with us to our next class, but wouldn’t tell us why.

The next day, although I was somewhat confused and yet intrigued as to why we needed these rocks for class, I went out in my yard in search of a rock. I found one. It had light, medium and dark gray lines through it. It was somewhat pyramid in shape. It fit in my fisted hand. I liked it.

At the beginning of class the next day, our teacher told us about an experience she had when she attended a Native American ceremony.  The leader of the ceremony asked everyone in attendance to find a rock just as she had asked us to do. Once they had their rocks, they were asked to think of something, someone or an experience they had a hard time dealing with. At the end of the ceremony, the participants were asked to place their rocks in a pile as a symbolic way of leaving their issue behind.  Our teacher wanted us to do the same thing.

 Although I didn’t want to confront this issue, I thought this was a really cool idea and I really got into it. I slept with my rock right next to my pillow so I would see it as soon as I woke up and kept it in my pants pocket during the day so I would feel it pressing against my leg to serve as a constant reminder of the issue I was letting bothering me so badly.

 During the week, I thought a lot about the issue and I tried to analyze why I was letting it bother me so much, how it was effecting my life, and what I could do to handle it better. Being reminded of the issue by the rock constantly pressing against my leg, I was able to realize that the issue really wasn’t that big of a deal. I needed to put down the “rock” and move on. It wasn’t worth it. Once I came to this realization, a huge weight was lifted off of me.

Sometimes the “rocks” that we carry with us feel more like boulders and letting go isn’t as simple as just putting them down. Sometimes the rocks get thrown back on us and we end up having to pick them up again. It sucks when this happens, but we need to make sure that we don’t let these rocks weigh us down to the point where we feel trapped and cannot get out from under them. If this does happen, we need to realize that it is time speak to someone whether it is a trusted friend, a family member, clergy, or counselor. It is okay to do this. It is okay to admit we need help. Asking for help allows us to see our issues from a different perspective and assists us in putting down our rocks.  I would love to hear from people about how they handled a difficult situation and how they were able to finally put their “rocks” down.


Thanks.

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This is an amazing informative article on the future of Spina Bifida. A must read, in my opinion!

https://www.thedailybeast.com/spina-bifida-could-vanish-with-this-experimental-fetal-stem-cell-therapy?source=TDB&via=FB_Page