You are SUCH an inspiration.

You are SUCH an inspiration. How many time have we as disabled people heard that? How does it make you feel?

For me, I get it, but I don’t. I understand that people look at people with disabilities and think, "Wow, that’s great that he or she can do that." Personally, I don’t see myself as an inspiration. I am just living my life just like everyone else, I’m just doing them in a different way. Yes, I have to do them somewhat differently than you, but I can still do them. You can drive. So can I. I drive with hand controls because my legs don’t work like yours, but I can still drive. If it turns out I can’t drive, I find an alternative. You can run in races. I may not be able to run, but I can take part in a wheelchair or a hand bike. You can cook a meal for your family. So can I. Again, I might need things in the kitchen modified such as countertops, or the stove or refrigerator lowered to where I can reach it better, but I can still do it! I don’t think of it as inspiring, I just think of it as life.

My independence as a person with a disability, is very important to me and I will do everything within my power to achieve and maintain that independence. As I said in previous posts, I have always been encouraged to do things on my own. Some people look at it as inspirational. I look at it as my life, and I just do it.

If there was something that I couldn't do or didn’t know how to do, I asked someone to either let me try it or at least show me how to do it. If I could do it the "proper" way, or in a modified way, great! If not, I moved on. Most of the time however, for the things that were important to me, I found a way to do them.

I look at it this way. If I can motivate someone to at least attempt things that they wouldn’t normally attempt to do or to at least try, then I have succeeded. I would rather someone tell me I motivated them more than I inspired them. What are your thoughts?

　

　

　

　

　

　

　

　

　

　

　

Leave Me Alone!

I would venture to say that a lot of us with SB and other disabilities aren’t able to live alone for various reasons, whether it be financial or physical or whatever. I know that Im not able to. Mine is mostly financial.  Plus I do like having someone around to keep me company. But there are times when you just want to be alone?

I have a roommate/friend, who lives with me in my family home. He moved in about a year after my father passed away. We have our ups and downs, but for the most part, we get along very well. People who know me will find this hard to believe, but there are times when I am not the easiest person to get along with, shocking, I know! We are also like Oscar and Felix. I tend to be the slob, again, shocking, I know!

My roommate is very easy going. Doesn’t seem to let much bother him. I am the one who worries and freaks out if things don’t go the way I think they should go. He just looks at me as if to ask, “Are you done now???”

There are also times when I just want to be alone.  When you live with other people, this can be an impossibility. Granted, it’s not like I would do anything differently with him not here, but it’s just nice to be alone once in a while. I remember as a kid there were always other people around, my parent, my siblings….

If I wanted to be alone, I had to either go to my room or, once I got my driver’s license, I could go out of the house to be alone. That seems to be the way it is now too. Believe it or not, I have found my solitude at the gym. Yes, there are people around, but there are no distractions. I also like riding the lawnmower. I can think things through while I do these things. They are calming to me. I really enjoy them.

Are you able to get away from people? How does it feel? What do you do?

 

 

Melt Down!

This post is kind of a follow up to my post on Statin medications. However, this is from my emotional point of view at the time. For those of you who have read the post on Statin medications, you might see/read references.

 

            A few days ago, in one of the Facebook groups I am in, someone was having a “I Hate Spina Bifida Day”. There was some discussion about his feeling, and it was decided that he was in fact entitled to have an “I Hate Spina Bifida Day”. This is what prompted this post.

 Several years ago now, I was taking a cholesterol medication called Symvastatin. I had a severe reaction to it. In the commercials for this medication, it says “May cause muscle weakness.” They aren’t kidding. I cannot prove it, but I believe that the medication, along with Spina Bifida, caused me to have a, worst case scenario reaction.

I had to use a walker to get around, or scoot around on my butt. My fingers would not fully extend. When I started going to PT, under my doctor’s advice to keep my strength up, I couldn’t even curl two pounds. Everyday tasks such as making a pot of coffee, or doing laundry became nearly impossible. I could barely sign my name to a check.

I was unsure how long this would last. Would it be pertinent? Would I deteriorate even more? My heart is a muscle too, would that be affected? My concerns were endless. My siblings even suggested that I look into making wheelchair modifications to my house in case it came to that. I told them I wasn’t going to do anything until my doctor told me it wasn’t going to get any better.

I kept in contact with my doctor, who referred me to a neurologist to see what he thought. When I called to make the appointment, they told me it would be over a week before I could get in to see him. I went ahead and took this appointment, but asked if they could call me if they could call me if there was a cancellation because I was very concerned. They said they would.

After I hung up the phone, I went into a COMPLETE MELTDOWN. I slammed the phone down, I screamed, I cried, I cursed, I SPAZZED! I had had enough. I was tired of it all and wanted some answers!

After my meltdown, the phone rang. It was the doctor asking if I could come in the next day. I was very relieved!

So, in conclusion, YES, it is okay to have a meltdown, an “I Hate Spina Bifida Day”, or whatever you want to call it. Have any of you had one of these days? How did you handle it?

 

           

What are you lookin' at????

Have you ever just wanted to smack somebody? I know I have!

Most of the time when I am out in public, I don’t have a problem with people staring or imitating the way I walk or making rude comments. However, it does happen. People, mostly children, will stare at me, imitate the way I walk (not very well I might add), or make rude comments as they pass by me. I am used to it now and I just shrug it off and move on. I do have to bite my tongue sometimes though, or, in some case, I’ve had to keep myself from smacking them!  LOL

Once when I was a kid, my mom and I were at JC Penney’s. Mom was looking at clothes. I got bored, so I walked away. Well, I ran into this kid who wouldn’t stop staring at me. Every time I looked over at him, he was looking at me. I would move away and he would follow me. This went on for a few minutes. Finally, I had had enough. I just stopped and stared back at him. He didn’t like it very much. He soon walked away when he was given a dose of his own medicine. I felt vindicated that day! Have any of you had a similar experience? How did you handle it? Feel free to leave a comment for others to see your story.

I am NOT a Child!

Have you ever felt like you weren’t taken seriously because of your disability? I have been fortunate, as an adult, to not have this happen to me. However, I observed an incident at a wedding reception I attended several years ago, and it still bothers me today.

            There was a young gentleman there who had SB, only he was in a wheelchair. I overheard a conversation he was having with an older woman, possibly in her 60’s. I was impressed that he lived by himself in an apartment and had a girlfriend and seemed to be very independent. At the time, I still lived with my parents, so I admired him for being able to live on his own.

            As their conversation progressed, the lady asked him what he like to do. He replied that he liked to cook.  Then she asked him what dish he like to cook the most. It was something quite involved like lasagna, I can’t remember.  Again, I was impressed.

The thing that bothered me about that conversation was her tone. She spoke to him in a very condescending manner. As if he were a child. I don’t know if it bothered him or not. I just felt bad for him having been talked to that way.

Has anyone else ever been on the receiving end of a conversation like this one, or possibly overheard one? How did it make you feel?

           

WHAT IF?

In a class that I took a while ago, I mentioned that I did not like math. The teacher asked why. I said I have always had problems with it. This prompted a back and forth between the teacher and I.  “What if you tried harder? Would you get a better grade?” “I might.” “What if you got a better grade? Would that make a difference?” “Maybe a little.” “What if this continued and you got better and better?” “Would that change your thinking?” “It would probably start to change.” This back and forth went on for several minutes.

This back and forth has stuck with me even til today. What if I did try harder? What if I did read a little more?

 

WHAT IF?????

This conversation has stuck with me even til today. I am in another class that I am having difficulty with. I have found myself asking myself similar questions to those asked of me in that class. It is not sinking in yet, which is okay. Sometimes things don’t go as we plan them to go. We just need to come to terms with them and move on. I believe that it is okay to modify our goals as we go. I DON’T believe that modifying our goals is giving up. It is ok as long as you don’t give up. Never ask, what if I give up? Always ask, what if I keep going?

 

Who Am I?

 have been taking college classes for MANY years.  A few years here, a few years there.  In one class, were given an assignment entitled Who Am I? In this assignment, we had to describe who we were: Father, son, mother, daughter, etc. I thought this would be a relatively easy assignment, after all, it was just me describing me. I started by saying that I was a 47 year old adult male with Spina Bifida. I had used this same line for other classes. I didn’t think too much more about it and I just went on telling thing about myself like I was on disability, I used to work at a school for and with disabled children. Most of my initial description revolved around my disability and disabilities in general.

When the teacher returned our papers, she asked us if we would mind sharing some of the information we shared in our papers. I volunteered. I started reading what I had written in the paper, “I am a 47 year old male with Spina Bifida.” The teacher stopped me right there. She asked me why I put that first. I said I had put it because that was who I am. She proceeded to ask me a series of questions like:  Is that all you are? No. Are you a son? Yes.  A student? Yes. Are you a brother? Yes.  Then she asked if I was more than a male with Spina Bifida. I said yes. Her whole point in the line of questions was for me to see that I am more than just my disability. This assignment stayed with me throughout the rest of the semester, and as you can see by my writing about it, it is still something I think about. In fact, I just noticed that is how I started my profile information in my blog with the same information. I did, however, go on to explain other aspects of my life. I am someone, I have hobbies and interests, I am an active person who just happens to have a disability.  Has anyone else experienced anything like this?  How do you identify yourself? I hope that after reading this that those who feel like I did will examine yourself and see that you are move than a disability.

 

Alternative Housing

I am sorry I have taken a break from my blog, but I am back now.


I am fortunate enough to live in a house and can take my time looking at other housing
options until I feel like I am making the right decision for me. I have done some more research
on other living arrangements. I have an appointment to talk to the people at the apartment
complex I mentioned before (the one geared towards the disabled) in early April.  In the
meantime, I have checked into a local trailer park and also looked at other apartment buildings.
I have an appointment this Saturday to look at trailers.


The trailer park sounds like it might be a good option as well. It will be smaller than the
house I am in now, which will hopefully mean easier to manage. However, I will still be
responsible for replacing the roof (eventually), mowing the lawn on the lot, which I can get a
friend to do for me, gas, electric cable, everything I do here, just on a smaller scale. At the
apartment, I would only be responsible for rent and, the utilities and cable, but from what I
have learned so far, these two options might balance out.


As you may or may not know, I have a friend/roommate who I live with here at the
house. We are considering continuing to live together after the move. The nice thing about it is
that he is also on disability, so we would both qualify for the apartment building. I will let you
all know how the process is coming.

Im Getting WHAT??? I have to do WHAT????? For those who follow my blog, this is a repost of a previous post, I accidently deleted it).

*** For those who follow my blog, this was a post I did before. I accidently deleted it and I am reposting it. Thanks for reading!***

 

 

This revelation has come as a bit of a shock to me. I am getting older.

 NOOOOOO!

 Contrary to my beliefs, I am getting to the point where I can’t do everything I used to be able to do. Imagine that! Can anyone else relate?

Over the years, I have had my family hint to me that I am getting older and that I might want to consider downsizing, aka moving out of the family home into something more practical. This would eliminate the need for mowing the grass, heating and cooling the house, house repairs, etc. For those who know me, this is NOT an easy task for my family to achieve. I can be VERY stubborn and bullheaded.  “I can do this.” “No, I don’t need help, but thank you anyway” the list of denials goes on and on.

When I was little, I was never told that I couldn’t do something I wanted to do or at least try to do. I believe that this has a lot to do with me being the way I am now. Very independent. Although I lived at home with my parents all my life until they passed away, I have always been free to do pretty much what I wanted.

 I drive, I used to work, I can cook, clean (sometimes), do yard work (sometimes) etc. But, I’m getting off track.

            The whole idea of me moving out of the only home I’ve ever known has me freaking out to an extent ‘cause it is something that I have never had to face. I have a tendency to dwell on the what ifs. I really need to stop that and just have faith that things will work out. Things might not go the way I want them to go, but they will go regardless.

 Last night, I took the first step toward dealing with this next phase of my life by getting an application for an apartment building geared for the disabled near me. This will not happen overnight, so I will have time to come to terms with it gradually. So, onward I go!

 

Fight for your kid.

When I was working at the school, I had the awesome opportunity to work in a preschool handicapped class. One of the students we had in class had Spina Bifida. This student was in a wheelchair, and had no obvious neurological impairment, only physical. The teacher I worked with and I both knew that this student did not belong in a class/school like ours. The child needed to be mainstreamed in a regular classroom. In hindsight, I probably shouldn't have done this, but I pulled the parent aside and told her that her child did not belong in our school, I don't know this for sure, but the teacher probably did the same thing. This child was in our school mainly because the school district said they didn't have the ability to accommodate their needs. Soon after the teacher and I talked to the child's mother, she began to fight to get her child back in regular school. This took several months, but the school district finally relented and allowed him to attend the regular school in his district.

This particular incident bothered me because aside from being in a wheelchair, this student was me. As I said in a previous post, I was welcomed to me local school district no questions asked.  I was very surprised that they denied this child access to attendance in his home district. Most of these new ADA laws went into effect after this incident and definitely LONG AFTER I was in school. I hope that things have changed in schools now, so that those who are capable of functioning in a regular classroom are permitted and accepted.

Rewarding experiences

I worked as an aide in a school for Special Education students for 20+ years. I worked with many children over the years. At times it was difficult and frustrating, but it was also rewarding. It bothered me that we didn't really have specials such as art and music as part of the education we were giving the children. I would like to relay two experience I had while there that really touched my heart. Both stories involve children with CP.

I am very This It was free time, and this student had gotten paper to draw on. I walked over to see what he was doing and to just talking to him and other same time, in a round about way work on his speech and language skills. I asked him what his father did for a living. He kept saying "Shan, Shan." I couldn't understand what he was saying and I could see he was starting to get upset/frustrated. I asked him if he could draw a picture of what his father did for me. He proceeded to draw a picture of a truck, then he found a template of a Swan and traced it onto the side of the truck. When I saw this, I asked him if his father worked for the Shwann Ice Cream company. He said YES! The look on his face lit up because I understood what he was trying to tell me.  If it hadn't been for art, this student could have gotten upset because of his communication problems. Thankfully, that didn't happen.

The incident involved another student who had communication problems. Under the direction of the speech therapist, I had been working on him being able to say what his name was when asked. I had been working on this with him on a daily basis for quite some time. He was making great progress, but still was unable say what his name was without a verbal cue. One day, my mother came in to bring me something I had for gotten at home. He walked over to my mother to greet her. She asked said hello and asked him what his name was. He spontaneously answered her by saying "Albert". I nearly cried. I told Mom that I had been working on that with him and that was the first time he had answered spontaneously. We both praised him for his response.

I am not working and am on disability, but every so often I think of experiences like these and I miss them. Thank you for indulging me and I hope you liked reading this and that you will see that sometimes things that seem impossible aren't always so.

I know this is a touchy subject, but it is important Obesity among Persons with Spina Bifida - Spina Bifida Association

Obesity among Persons with Spina Bifida - Spina Bifida Association

Importance of Family 2.

All throughout my childhood, my parents NEVER told me I couldn't try something. They went to the elementary school in our township and asked if I could attend school there. They said, of course I could, they were expecting me.

When I wanted to try ice skating, my father attached metal stirrups to ice skates so they would fit in my braces so I could skate. I only went once, got on the ice, fell on my butt and that was it, I was done, but I tried. By the way, I still have the skates.  We had a pool in the back yard and I swam every day I could. I was a regular fish.

One day, my neighbor friends came down to the house and they spent the entire day teaching me how to ride a bike. When my father saw me riding it, I am told he cried. That was something he wasn't sure I would ever be able to do. I went fishing with my dad, canoeing, white water rafting. I wanted to learn how to drive, my parents were hesitant, so my younger brother let me drive his car. I almost hit a cement wall and forgot to move my foot from the accelerator to the brake, but details, details.....  As you can see, my parents were very supportive of anything I wanted to do. And by the way, I did eventually get my license and I have been driving for almost 30 years now.

School was and still is difficult for me, I didn't grasp a lot of things, had trouble reading, MATH IS MY NEMISIS, but through it all, my parents, and teachers encouraged me. One year, I had had shunt surgery right before school started. When I returned to school, I had no idea what the students were doing, I felt lost. My teacher, Mr. Kauffmann, saw that I was having difficulty and told me that I was not dumb and I could do this, I just needed a little help and to try harder. That conversation with my teacher and what happened next changed my life.

My teacher, the principal and my parent talked about me possibly he having to repeat a grade. I believe what happened next was very unique. The principal called me to his office and told me what they had all discussed. He told me it was MY DECISION what I wanted to do. After talking to my parents about it, I decided I wanted to repeat the grade. It was the best thing I ever did.

As you can see, my family (and teachers) did everything they could to help me succeed and to be as independent as I am today. For that, I will be forever grateful.

The Importance of Family

Conversations that I have had the pleasure to have over the past few days have gotten me thinking about the importance of family, regardless of whether you are disabled or not.


My family is a little unusual, in that the age range is quite significant. I am the youngest of five children. My mother was 43, and my father was 46 when I was born. My oldest brother is 23 years older than me, another is 20 years older, another is 10 years older and my sister is 5 years older than me. My two older brothers were in seminary and college when I came along. I jokingly tell people I was an oops!


Several years ago, I took a class where we were asked to write an autobiography. I decided that since my situation was kind of unique, I would interview my parents and siblings to get their take on my birth. Initially, my father was mad at himself because he didn't think my mother needed to be pregnant at her age ( at that time, her age was cause for concern), my mother was concerned for her health as well as mine. My oldest brother wondered how my parents were going to handle the added stress and how it would effect them physically, emotionally and spiritually. My other brother had heard that things were bad, but they could have been a lot work. My younger brother and sister didn't understand why I wasn't able to come home right away. Everyone, including my mother was afraid to hold me because I appeared to be very fragile.


 I had the initial closure for the SB right away, and soon after had a shunt placed to relieve my hydrocephalus issues. The initial shunt had to be replaced soon after it was placed. Many year of therapy and surgeries for different things followed. My entire family, and even members of my small community, took part in making sure I got proper range of motion exercises to help me get stronger.  I can honestly say that I don't know if I would be here if it wasn't for the care that I received from the good Lord, Children's Hospital of Philadelphia (CHOP), my mother and father,  my siblings and community.  As I grew, I did just that, became more and more functional and independent. I will continue the story of my life in my next post.

Diet and Excercise for the disabled.

I was recently asked to post something about diet and exercise. Personally, I have started going to a gym a few days a week for exercise. I also plan on continuing participating in wheelchair 5ks.  As for diet,  I am still working on that. :) Lol. Since I don't have much personal experience on either of these subjects, so I looked for what I felt was a reliable resource online. I hope you will find this helpful. I would like to emphasize that before you take on any form of dieting or exercising, you should consult a medical doctor to ensure you go about it in a safe and effective manner. Good luck and know that I am right there with you trying to improve my health also! :)

Traveling with Medical Issues - Spina Bifida

Traveling with medical issues can be a pain, especially time consuming. By the time you pack extra supplies and get to the airport, you can be exhausted before you even get to your destination.

 I travel, by plane, to Georgia once a year to visit family. I always book my flights online in an attempt to make it easier, sometimes this helps, sometimes it doesn't. By booking online, it lets them know ahead of time that you are going to assistance, either with a wheelchair to get to the gate easier. It doesn't matter if you have your own, or whether use one of their wheelchairs, you still have to wait for someone to come push you to your gate. I had to wait about 20 minutes one time and made it to my gate with only a few minutes to spare.

In my experience, once they arrive to push you to the gate, things run relatively easy. They make sure that you get through security and if you tell them that you cannot stand to be search, they will do it my hand explaining as they go. One time when I went through, I had my braces on my legs and they just used a cloth of some kind to test to make sure you weren't carrying or didn't have anything on them that might cause a problem. They also tried to make it as pleasant as possible by trying to make light of the situation. I love traveling this way.

Shunt Revision, Pity Party

Been thinking about this all morning, so here goes.

Back in the early 90's, I had gone to chorus practice. While there, I tripped on a wheel of the dolly the piano was on. I landed on my hands but my head shook from the impact. When I got up, I have a MASSIVE headache! I drove home and told my father I had a headache and I was going to go to bed. I did not know he didn't hear me.

During the night, I got up and got into the tub, thinking this might help relieve my headache. This was the last thing I remember.

In the morning, my father found me lying in the tub out of it. At 80+ years old, he dragged me out of the tub, got me dressed, and took me to the Drs, apparently I had asked him to take me to the Dr instead of the hospital, again,  don't remember. Once at the Drs, I went in by myself, he said he wanted me to go get an MRI. I told my dad I didn't want to go get it cause I didn't have medical insurance for that ( I really did though). Dad took me home, but then ended up taking me back to the hospital. The next thing I knew, I was waking up in the hospital having had my shunt replaced.

Within a few days, I was released to go home. Once home, I still wasn't feeling well, and ended up back in the hospital, apparently, the new shunt had gotten infected. I was re-admitted and they took the new shunt out. In order to get the infection to clear, I had to have small drains (to the outside) put in my head to drain the cerebral spinal fluid and the infection. I was in the hospital for the entire month of December of that year. Once the infection was cleared, and I had yet another shunt placed, I was allowed to go home again.

Following this experience, I got on a chat group I was in at the time to weeny whine about my experience, after all, this was my 4th revision in my lifetime. Soon after I posted, a young lady responded and told me about her sister who had Spina Bifida and hydrocephalus like myself. Her sister was only 20something and had had 20+ revisions. After hearing/reading about this young lady's sister, I felt like my problem were minor compared to her and probably to many others. I am not trivializing what happened to me, but it did cause me to think twice about things that I might get mad or upset about. Things could always be worse. Since this experience, I have learned to be thankful for every day.

Continuing Education

A few years ago, I made the decision to go back to school to try again to get my associates degree. I have been trying to get my degree since the late 80's. I would go for a while, then stop. Then go again, etc. I have also changed my major about 2-3 times. During this entire time period, there were certain classes that I avoided like the plague! Especially MATH! I have NEVER been good at math. I can do basic addition, subtraction, multiplication and division, but as for anything else FORGET IT!

The past couple years, I have been taking Pre-Algebra. I fail Pre-Algebra 1 the first time, and then passed it by the skin of my teeth the second time. After I failed Pre-Algebra 2, the college I attend finally decided to agree that there might be a problem. They weren't sure prior to this because I wasn't really putting forth much effort, which in all honesty was true for the first time I took Pre-Algebra 1, but not when I took Pre-Algebra 2.

I was recently tested to see where I was academically. It was discovered that I truly do have a learning disability, especially when it comes to math. To be honest, once they discovered this, I felt relieved. I was beginning to think that it was all in my head. I was beating myself up over it, thinking that I truly was stupid and just couldn't do it because of being lazy and not putting forth enough effort. Since this discovery, the Disability Support Coordinator and I are working on finding an alternative math class, that does not involve actually calculations, yes, they do exist, I didn't think they did.

Every time I get the chance to talk to a young person about school, regardless of whether they are disabled or not, I encourage them to go to school while they are young. I will be 49 years old in a couple months. I have discovered that the older I get and the more life gets in the way, the harder it is to achieve this goal and I don't want to see others make the same mistake I did.

Oh, and if you are disabled, there are a ton of resources out there to help you achieve your goals. I used Vocational Rehabilitation, and resources available through the college such as tutoring. Do to the ADA laws, if you qualify, you might be entitled to such resources as: more time for tests, permission to tape record the class, a note taker, or they will show you certain study techniques to make learning the material easier. I hope this post encourages those considering going on to or going back to school.