My Academic Rocks

In my previous post, I talked about how we all tend to let “rocks” weigh us down and I gave an example of how we can get rid of these rocks.  In addition to rocks that anyone can have, people with disabilities have their own set of rocks. These rocks can be brought on by our disabilities (not being able to do certain things others can), thrown at us by others (being ridiculed because of our short comings), or they can even be self -imposed (having a defeatist attitude). We can let them weigh us down, or we can acknowledge them and then find ways to put them down and live our lives. In this post I am going to talk about The academic rock I have been carrying around and how Im dealing with it.

Soon after I decided to go back to college, I ran into someone I hadn’t seen in a while. I told her that I was planning on going back to college after a very long break. Let’s just say she less than supportive. This temporarily got to me. Was she right? Was I going to fail or at least give up again?  NO! I decided right then and there that I was going to prove her wrong.  She will probably have forgotten what she said by then, but I plan on sending her a graduation announcement to let her know I did it!

Not long after this conversation I met with the Disabilities Coordinator at the college and told him about my past at the college. He was surprised that I have been attending the college off and on since the late 1980s.  I jokingly said, yeah, my family might have to accept my degree posthumously, but I would get it!

During our meeting, I told him about how I have had major difficulties throughout my life where academics are concerned and how they are rocks or better yet, my boulders! I said I have always had problems with reading comprehension, organizational skills, and especially math and that because of these issues, I have developed a defeatist attitude, and yes, I have also become just plain lazy at times.

After I told him about my issues, we worked on strategies to try to develop more effective study skills including:  limiting the amount of classes so I can concentrate better, learning how to take better notes, and not procrastinate as much as I have in the past, AND ways to avoid distractions such as Facebook! Lol.

Although I am on academic probation again due to my nemesis, MATH, I am working on ways to become more successful the next time I attempt a math class. In the meantime, I am taking classes that I know I will be more successful in. By doing this, I am hoping to boost my GPA as well as my self-confidence. This is my way of gradually, yet steadily getting rid of my academic rock.

Different aspects of our disabilities can weigh us down, even alter our lives. We all need to look for ways to lighten our loads and not let other people and things pile on the “rocks”.  If you would like to, please feel free to share your stories of how you dealt with your own set of academic rocks. Thanks!

           

 

 

Put Down Your Rock!

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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Ever had one of those weeks?

Ever had one of those weeks? The kind where nothing seems to go right? Like you were on one of the hidden camera Punk’d type shows? Last Friday seemed just like that for me. It was a disaster!  First, my laptop died, then my cellphone died, then my car died, all in the SAME day! Seriously??????? I swear, electronics and anything mechanical hate me!  And it gets better, this all happened the day before I was supposed to participate in the wheelchair 5K for SB in Philadelphia.

 

I didn’t know whether to laugh it off, scream, or cry. The laugh it off option didn’t last long. I was NOT happy.

 I ended up putting the computer in the shop. The motherboard is fried.  I got lucky with the cellphone, I was able to just change out the battery. J

As for the car, it had to be towed, thank God for AAA! Not worth fixing. What now?

 I called my sister to see if she or her boyfriend could drop me off at the bus stop so I could get to the college all week, since I live in the middle of nowhere.  Oh, did I forget to mention that I had never taken public transportation and had no idea what I was doing? Thank God my roommate/best friend was able to help me understand how all that works. It was fun coordinating rides to and from school.

A good friend of mine agreed to take me car shopping to hopefully end the nightmare of being carless. I treated her to dinner as a thank you. We went to check out the first car I had seen online. It was a Honda Fit. It was a little bigger than I wanted, but I needed something a little bigger so I could put both my wheelchair and hand bike in it. It was priced within my price range, so I was happy, but I decided to look around some to make sure there wasn’t a better deal out there. I had bought my car that just died without looking around and I ended up paying much more than I should have.

We checked out several places and I was either not impressed, or it wasn’t within my price range. We decided to check out one last place. We were shown an ’09 Toyota Scion, automatic, power steering/brakes, power windows, AND a panoramic sun/moon roof. Oh, yeah! The price was kinda high for my budget, but the sales rep told me it was on sale for almost half off the asking price. YES!  This was definitely doable! The price allowed me to afford a two warranty on the car too. This way, I would be covered for a while in case, God forbid, something goes wrong. I am very happy with my purchase.

Have any of you had “one of those weeks”? I would love to hear about it and how you handled it. Please feel free to share your experience. Thanks - Jim!

Here’s my car. J

 

 

 

 

 

 

 

 

 

 

"SUCK IT UP!"

Sometimes people say things without stopping to think how it will make the other person feel. They might mean well, but it doesn’t always come out the way they intended.

            Friends of mine have a daughter named Anna who has Infantile Autism. This means she has very limited communication skills, developmental delays, and ritualistic behaviors associated with Autism. As if this wasn’t enough to deal with, she also has uncontrolled seizures! REALLY???? Autism wasn’t enough? This lead them to consult their neurologist on how to deal with her seizures. He told them about a study that was being done through Johns Hopkins in Baltimore Md., using a diet as a way to control seizures. He suggested they go down there for a consultation.

  The doctor at John’s Hopkins started off by asking how many seizures Anna was having. They told him she was having 800-900 seizures a month. His reaction was far from professional to say the least. “800-900 a month??  I have patients who have that many in a day!” My friends took his response as an insult as if he was saying, “Oh please, that’s nothing!”  In other words….

 

“SUCK IT UP!”

           

I am sure the doctor didn’t intend for his words to be so upsetting.  However, to people who have never experienced seizures or any other type of sudden onset illness, words like that can cut like a knife. They left the doctor’s office feeling like their concerns weren’t even heard, let alone acknowledged!

On the way home, they replayed the doctor’s words over and over in their minds. They started believing that what they were feeling was unjustified and that they should just,

 

“SUCK IT UP!”

 

Then it hit them. People are not supposed to have even ONE seizure let alone 800-900 in a month!  They had gone to this doctor for healing for their daughter and he left them feeling very upset and discouraged. This experience taught them they were going to have to learn to stand up for themselves and for their daughter. She was going to need a lifetime of care and in order for that to happen, they were not going to be able to just

“SUCK IT UP!”

 

We all go through difficult times in our lives and we all react in ways that are unique to us. It helps when someone is there to say “I might not know exactly what you are going through but I am here for you.”

 

But that’s not always easy, is it? We even have to tell ourselves to “SUCK IT UP” sometimes, don’t we? I know I have!

 

If we are able to feel true compassion for what other are going through, we’ll not only be able to respond without making others feel like they have to “SUCK IT UP!” but we can even help ourselves from feeling this way.

Has anyone else felt like they were being told to SUCK IT UP? What happened? How did you deal with it?

 

           

 

 

         

Physical Pain!

Physical is the most noticeable kind of pain. It can show in many ways; on your face, in your body movements, in the way you act and how you feel. The list goes on and on, but in simpler terms, you feel like crap!

            I am sooooo glad I don’t experience chronic pain due to my Spina Bifida. I might wake up sore and achy some mornings, but thankfully it goes away once I start moving. Even when I decide to be adventurous and do yard work, (I know, what was I thinking!?I?) I recover within a couple days. Some people are not so lucky.

            Since I have been on Facebook, I I have met a lot of people who experience daily chronic pain. I cannot imagine having severe daily pain that is some cases, causes people to have to rely on medications for any kind of relief.

            Tethered Spinal Cord is a very painful condition in which the spine develops scar tissue around it causing restricted movement of the spine and back. This is excruciating pain!

            Spinal Fusion is a surgery performed to correct scoliosis. This procedure involves inserting rods into the spine and attaching screws to correct the realignment of the spine.

            Just typing the descriptions of these two possible complications with Spina Bifida makes me cringe!

            I spoke to a couple of my Facebook friends about their experiences with Tethered Spinal Cord and Spinal Fusion to get there perspective on the level of pain associated with these issues. They told me that the pain associated with Tethered Spinal Cord was very intense. It caused them nausea, stabbing pain and restricted movement due to the tethering. As if Spina Bifida wasn’t enough already!

            If anyone out there would like to share their experience with this or any other issue causing physical pain, please feel free to share so that others will know that they are not alone!

Thank you!

           

Some-times in our lives.....

“Some-times in our lives, we all have pain” (Lean On Me; Bill Withers) and it can really suck! I don’t care if it is physical or emotional. It SUCKS!

Several years ago, my shunt malfunctioned. Yea! NOT! Not only did it malfunction, it got infected! Seriously?!?!?!? I ended up being in the hospital for the entire month of December because of the infection. So, yes, that means Christmas! There goes going places and exchanging gifts and missing out of my sister’s AWESOME rib roast. OMG, it is soooo good! But I digress…..

****It was brought to my attention that I didn't say that my sister  brought me some of the roast in the hospital. It was amazing as usual. LOL **** :)

Surprisingly, although there was some physical pain involved with this, the emotional pain was worse. On top of all that was going on with me, I was concerned about my father. Although he was in pretty good shape for an 80+ year old, I was still concerned about him. In addition to him taking care of himself, he was worried about me. He didn’t really handle my medical issues very well. Although he didn’t show it, they were very stressful for him. Because of this, whenever he would visit, I would always try to act as though I was handling things okay given my current situation.

One day while I was in the hospital, a very close friend of mine came to visit me.  She even brought me presents! J While we were talking, I broke down and cried and she just held me.  No words were exchanged, she just held me while I cried.

 

This meant so much to me.  

Years later, this same friend was going through a rough time. Due to certain circumstances, they needed to move. She knew this was something that needed to be done, but she still had a very hard time accepting it.

 

One day, she came over to my house for a visit. While we talked about what was happening, she just froze. I simply hugged her while she cried, like she had done years ago for me.

 

Neither incident needed words. Just the simple embrace of a close friend was enough.  We may not have completely understood exactly what the other one was going through, but we there at the right time for each other.

 

Our emotions can wreak havoc on us as we go through stressful times in our lives.  They can drive us to the point where we wonder if we will ever feel “normal” again. Have your emotions ever made you feel like you don’t know how you are going to get through a difficult situation? Have you had a friend come to the rescue and save your sanity? Please feel free to share your story and let others know they are not alone.

 

 

 

 

 

 

Feelings

Recently, I saw a post in one of the Facebook groups about people having their feelings dismissed. I found this bothersome. I also found this familiar, not from the stand point of having my feelings dismissed, but by being guilty of dismissing someone else’s feelings, or at least not taking them as seriously as I should have.

We all handle things differently. The feelings or pain that the person may be going through can be physical, mental, emotional, or psychological. We don’t know. We just know they are hurting. This can be seen by their actions or inactions or by their words or by their silence. This dismissal of someone’s feelings can come from anywhere, family, friends, disabled peers etc.

·        I have aches and pains as I’m sure others with Spina Bifida or any other disability do. Fortunately for me, mine are not severe. I wake up hurting, but once I start moving, I am good to go. That is not the case with everyone. People with tethered spinal cords, I understand are in excruciating pain all the time. This must be a nightmare.

 

·        I have suffered the loss of a parent/s or loved one either through death or through that person moving away or simply by losing touch for one reason or another. Yes, I grieved their losses, but I was able to find the strength to accept and deal with the loss and move on in a constructive way.

 

·        Ive had times when I have been tested mentally, emotionally, psychologically or spiritual. This was primarily due having to deal with aspects of my Spina Bifida that I never had to deal with or accept before.

 

While writing this post, some of the points really hit me. I am going to look into each of these more and talk about how I have handled them and how I might have handled them differently. I look forward to hearing from people about how they handled similar situations. Thank you in advance.

 

Discrimination

In the Spina Bifida and disability groups I am in on Facebook, we often talk about issues of discrimination because of our disabilities. Personally, I have rarely experienced any discrimination, but recently, I experienced something that I cannot shake off. 

            I had a meeting at the local Vocational Rehabilitation (DVR) office. The office is located in a building that houses other offices and agencies.  While I was waiting to be called back, I needed to use the bathroom. I left the office and went down the hall where I was told the bathroom was. When I got there, the door was locked. I had to go BACK DOWNSTAIRS to use the bathroom. Why was the door locked? Why do I have to go downstairs when there is a bathroom right here on this floor? What if I had an “accident” before I got the bathroom because of having to go downstairs?

 When I got back upstairs, I saw men in business suits entering the bathroom with keys on a giant key ring.  When I mentioned this to the people at DVR, they brushed it off as if to say they didn’t want to comment on the reason the bathroom was not open to the public. As mentioned earlier, I don’t easily get offended over stuff, but I just can’t seem to let this go. Here is an agency who is supposed to advocate for people with disabilities and yet they tolerate inaccessibility to bathroom facilities to their clients! Seriously????

I am debating whether to write a letter to the state asking why this is allowed. What about all advancements we have made where discrimination against people with disabilities? Is there a certain protocol I am unaware of?

I really want to pursue this. Who is with me? I realize we all live in different parts of the country and in some cases, the world, but I am willing to do the research for this.

 I would need your stories of discrimination too, not just mine. This is how the ADA (Americans with Disabilities Act) started, with a few people having mutual issues with how the disable were being treated and now, although we still have a ways to go, we have come a long way.

I gotta GO!

Throughout my life I have never felt like I had a disability. However, sometimes good old Spina Bifida kicks me in the butt, literally, and reminds me that I am not invincible. I was recently in the hospital with a pretty mild bowel blockage, as far as bowel blockages go. This is a rare occurrence. I can only remember about 2-3 in my life.

When the doctor told me I would need to change my bowel regimen. I was like, oh, crap!  I got very defensive.

“I don’t have time for that.”, “I have a life. I can’t be in the bathroom all day.” The excuses go on and on.  Incidentally, I was in the bathroom for days once. It was NOT fun.   

The doctor recommended that I drink Golytly  (Go Lightly, the stuff used for colonoscopies) once a week. Let me tell you, you DO NOT go lightly!!!  I am trying something somewhat less harsh first. I have decide to take the advice of a friend and try Senna-S. Her daughter, who has a chronic issue with her bowels, uses that and it works well.  The point is, I am trying. I just don’t want to “go” from one extreme to the other. Ya, know?  

So, now that I have bared all, who else would like to share their bathroom stories?? J Thanks!

Wheelchair Etiquette

                As I have mention in prior posts, I went to regular public school from Elementary to high school in a relatively small town. In fact, I was the only physically disabled student in my school. I had some remedial classes, but that was the extent of any accommodations. In fact, I only saw people in wheelchairs when I went to therapy in Philadelphia or when we went to Spina Bifida meetings.

For the most part, I was hardly ever around other kids with disabilities who used braces, crutches, or wheelchairs. In fact, being around someone in a wheelchair was as rarity until a few years ago.

As a way to give back for all the help that my parents received in dealing with my issues, my parents would counsel parents of babies with Spina Bifida. A few years ago, I had the pleasure of reconnecting with one of these families. Their daughter Nicole and I are friends now. Initially, I was uncomfortable around her. I asked myself questions that I am told non-disabled people ask themselves when they encounter someone in a wheelchair. Do I sit? Do I stand? Do I kneel down? What is proper etiquette when interacting with someone in a wheelchair?  

Soon after we reconnected, I confessed to her that when we first met, I was uncomfortable around her because of the wheelchair. I explained to her that it wasn’t because of her, it was because of not having been around people in a wheelchair. I asked if that upset her. She said no, she understood. Since then, I have gotten used to being around her. For those in wheelchairs, do you prefer that people interact with you in a certain way? If you would like to share your experiences and preferences on this subject, I would appreciate it. Thanks!

For more information, please visit www.mobility-advisor.com/wheelchair-etiquette.html

Wheelchair IN-accessibility.

As some of you may know, I am new to using a wheelchair. I only have to use it part time, for distances. I use it up at the college to go to my classes. Now that the weather is getting better, I am going to start parking in the parking lot furthest away and wheeling over to the building where my class is.

The first bad experience I had was even before I had to use a wheelchair with any regularity. It happened when a friend of mine and I went to stay in a bed and breakfast. This incident happened when I was going through the weakness issue I wrote about that was caused by the cholesterol meds.

When we got to the bed and breakfast, the stairs to the house were VERY steep. I looked at my friend and I almost cried. How was I going to get in there? She told me not to worry. She would go see if there was a ramp in the back. There was a ramp, but it might as well have been two, two by fours next to each other. Because it was so treacherous and tiring for those who had to push me, I could only go out once a day. The only good things about that experience were the breakfasts and the sleigh bed.

Another experience I had, just this year was in Philadelphia. We had gone to see the play my niece had designed the costumes for. Before the play, we went out to dinner. When we go to the restaurant, there were steep steps out front. My sister went to ask if there was a wheelchair entrance. The hostess said there wasn’t, so I ended up having to walk up the steps. In the meantime, the hostess had found out there was a ramp I could have used.

Once we were seated, we were asked to let them know about 10 minutes before we were ready to leave. That way, they could set up the ramp. When we got ready to leave, they had to move a mop bucket and a few other things out of the way. It was a very tight space. The ramp was a rickety thing butted up against the side of the building. We even had to steer past a couple employees outside smoking. The good thing about the experience was that was the best burger I have ever had! All things considered, I would go back if only just for the burger.

 I would appreciate it if those who read this would share any experiences they have had.  Thanks!

Why Won't They Listen?

Okay Folks, time for a rant! What is WRONG with people?? Just because we are in wheelchairs, us braces or crutches, or because we walk differently doesn’t mean we are stupid or helpless! A lot of us are capable of a lot when given the chance. Some of us can drive, go to college, hold jobs, raise families, and MUCH more. We can do it!

            I have read things on Facebook that bother me. I have read that people with disabilities, specifically Spina Bifida, who have jobs are being let go for unjustified reasons. Some who volunteer are being asked to cut back their hours. I would think that they places where people volunteer would appreciate the help. Family members are sheltering us or prohibiting us from trying to learn things so we can achieve a sense of independence. I would think people would do what they could to help their child/family member be as independent as possible.

            Some of us are ready, willing and quite able to learn things to increase our independence in areas such as cooking, cleaning, money management, how to acquire and take public transportation, and time management, just to name a few. The possibilities are endless. We just need to be given the chance. In some cases, we just need to be shown how, not because we can’t do it, but because we have never been shown how. Don’t get me wrong, we love our lives, we just need them to accept who we are and to give us a chance to prove we can do things on our own.

Does anyone have any ideas how to get these people in our lives to help us achieve these goal? Please share.

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.