Wednesday, December 27, 2006


As I have said before, everything happens for a reason. This was something that happened that has changed my life significantly. My brother was in a business class that was only for Jrs. (which was him) and Srs. By being in the class you were joined in a club called DECA, which meant Distributive Education Clubs of America. Every year the class would participate in a fundraiser for the Muscular Dystrophy Association (MDA) called Shamrocks against Dystrophy. A Shamrock is a big green clover made of thick paper that is purchased for a dollar and you may advertise or honor someone on it. It is put on display so that people can see them. It is held during St. Patrick's day. It is a fundraiser that is held all over the the US (I believe). It generates a lot of money.

I am thinking sometime in January the employees at the local MDA office came to the class to motivate them in doing the fundraiser, talk about the services they provide, and to encourage the students of the other volunteer opportunities they have to help. Besides talking to the class they also showed a video of the summer camp program they have every year for anyone with the 40 different forms MD. As the students were watching the video my bro saw someone in the video with similar actions to mine. After they were done seeing the video they asked if anyone had questions. My brother was not one to speak up about my disability, but having seen the person with similar actions made him curious. He raised his hand and said "My sister has Friedrich's Ataxia." One of the gentlemen who worked at the MDA office (David D, many hugs to you!) said, "She is one of Jerry's kids!" He then gave my brother a business card and told him to have my mother called them because Friedrich's Ataxia is one of the forms of Muscular Dystrophy.

When my brother came home he fished the card from his wallet, and gave it to my mom saying, "You are one of Jerry's kids!" I was like, "I am who?" He proceeded to tell me and my mom that FA is a form of MD, and about the Labor Day telethon that raises money for MDA. That people with forms of MD are referred to as being one of Jerry's kids, because Jerry Lewis is the founder of MDA. I was thinking, aww man that is the show that interrupts my soap operas on Labor Day! I got over that quickly, and cannot wait to watch it every year. I get so overwhelmed with emotion hearing big hearted people that do not even know folks with MD give. My hat's off to Jerry Lewis too he is one big hearted individual, and I am proud to call myself one of Jerry's kid's (even still as a 32 year old woman)! We often wondered why my neurologist never said anything to me about this. I guess he knew he would have lost business, so he never said anything. I refused to go see the money hungry jerk after MDA was reveled to me and my family. To think he robbed my parents and I of 4 years of medical and financial help through numerous neurological Clinic visits (which is free), purchasing of Medical Durable Equipment (which is free, or pays a high % of) . Not to mention my happiness and attitude of being apart of the MDA family (which is free), and not feeling alone by being able to go to summer camp (which is free), or having the hope of a cure someday (I do not have to pay for research).

It makes me angry, but then again my thought is that everything happens for a reason. My life changed so much on that day. I have my brother to thank so much for opening his mouth. I never thought I would say that, LOL! As you will see in posts to come how influential MDA is to me. For more info on MDA go to

Thanks for taking the time to read, MISS S

Monday, December 25, 2006


This was something I thought was funny (at least to me), and wanted to share! This happened a couple of month’s after the year began. I had a history class in the farthest prefab on campus.

Let me explain what a prefab is for all you non-Oklahoman’s again, and more in detail. Prefabs were easy additions which is why they had them (I think). I am not sure if they have prefabs any more. Our prefabs were wooded trailer like buildings that were long and housed two different classrooms side by side. There were three or four different prefab buildings in a row with about five or six feet between each one. Each classroom had windows and a window unit (air conditioner) that had a mind of it’s own! NO, there were no bathrooms in them (Thank God). We would have to go to the main building. They all had wooden decks with about 4 steps into them. It was the closest thing to the Little House on the Prairie school that I have ever been to. Got a mental picture? Did anybody else have classes in prefab buildings? If so, what were they like?

Okay, on with my story. My history class was for mostly freshman. The class right next to mine was another history class, but it was for mostly upperclassmen. The teachers were both coaches in football. Every day was a rival between the two classrooms. The other class would always be yelling something into our classroom. We kept trying to figure out a way to get them good. I do not know whose idea this was, but they wanted to take a quiet, good student and make them storm out of the classroom yelling to our teacher about how they are going up to the main building to tell how they cannot get anything done in class because the other class is too loud. Guess who they picked? ME!! I think they thought that it would be more of a statement to come from someone who struggled just to get there. Again, I have no idea what came over me, but I decided to do it. Nobody helped me to walk while I did this. I was not having to worry about carrying my book's or anything else so I was confident that I could do it even though I very rarely walked without help. I went out the door putting on my poker face, and as soon as I could see the other class (they had their door opened also, it was hot) I started talking very loudly so the other class could hear. I told the teacher that “I could not concentrate in class with all the noise going on from the other class, and I will have a stop put to this when I tell the principal.” I went down the steps and across to the next prefab building, and leaned against the side of it. Until I reached the next prefab building I was walking with nothing around me to hold on to. I was concentrating so hard on what I was doing, and I did not fall!! Maybe that would have spiced things up even more if I had pretended to fall!! I could see my class through their windows and could hear here my teacher talking to the other teacher. The plan was working, and the other class was told to keep quiet. My teacher said he would go try to catch me, and he came around the corner to get me. He helped me back in the classroom and the other class looked scared, LOL! After I sat down in my seat we counted to 3 and the whole class yelled “GOTCHA”!!!

Do you have a funny story to share? I would love to hear it.

Thanks for taking the time to read, MISS S

Tuesday, December 19, 2006


It was the first day of school. My brother dropped me off at my first class which was typing. There were 5 to 6 rows of typewriters. The ones near the back of the classroom were older typewriters. I always tended to sit at the front of the classroom anyway. I got there early to make sure I was seated before the rush came in (I did this all the time). I had no idea who was going to be in my class. I didn't know the teacher either. All of my teachers knew about me and my requirements before I came into class. As the students began coming in some of them I knew while some I did not. I did not have any real good friends to ask to help me to the next class. That made me so nervous. I ended up asking some people that were acquaintances of mine in middle school to help. While they did not seem eager or want to jump for joy they agreed to help me.

One of the last people to come in the door was this girl named Kari. I caught myself staring at her. She was so pretty. She was one of those girls that just makes you sick, because she didn't wear make up and looked flawless! She was a senior and head cheerleader. Extremely popular and every boy in school wanted to date her. I thought I would never get the opportunity to meet her. Thought she would overlook my unpopular lanky freshman self. It’s the story of the uncoordinated duckling and the Swan Princess, LOL! At the end of the day we were told to report back to our first hour class for announcements, and to make sure everyone was getting around okay. I was dropped off at my class before the last class had left the room. I stayed outside leaning against the wall. Kari walked up to wait also. I could not resist saying anything to her, so after I said hello I told her I thought she was so pretty. She told me later that made her all vaklempt. She had a class with my brother so the next day she asked him what was wrong with me physically. My brother told her what he knew. She then sat down and wrote me a letter, and told me that she would love to help me to class any time she could. That all I had to do was ask her. She gave me the letter the next day in class. I was so overwhelmed and a little vaklempt myself as I read it. I took her up on her offer, and we were great friends from that point on. Think I made the other students who were going to help me jealous that I was hanging out with her, and she was helping me. They were all asking for a little uncoordination and balance so they could make friends with an upper classman, serves them right! Kari treated me like I was one of her best friends the whole year. We were always together and I would stay the night at her house often. She was a stylish person, and she had a ring on just about every finger. Sometimes I would have her take them off so I could play with them. That gave her an idea and she bought (she worked) me my first diamond ring for Christmas. It was small and dainty, perfect (I still have it). Now get your mind out of the gutter she was my friend! I am straight and so is she! Because she was an upperclassmen she could go off campus to lunch. So I don't really remember ever eating lunch with her. On a daily basis I would want to pinch myself to make sure she was really my friend. I envied just about everything about her.

One of the most remember able moments with her was when she took me out for a driving test in her old car (I was a girl, and did not pay attention to makes and models) at 15. She lived across the street from a church, and that is where we went to practice. I was so nervous but excited at the same time. I figured since no one was at the church and the parking lot was empty there wasn't a whole lot of damage I could do, right? My heart began beating fast when I first got into the driver's seat. I tried talking Kari and myself out of it. I couldn't even make my feet do what I wanted them to do any other time so what difference did this make I kept saying. I went extremely slow, and did okay in the parking lot. I was very surprised at myself. They only things I had ever driven was my grandpa’s (Mom’s Dad) riding lawnmower or the bumper cars at the fair. I did okay on using my feet with those things. I didn't have to worry about my balance in the car. So now I am making excuses for myself to stay in the car. Then Kari told me to turn onto a residential street. I told her she was crazy, but went ahead and did it anyway. I did fine still taking it very slow. I was staying in the lines and doing okay. I could not even color in the lines! She then told me to turn on to this street that was busier as it was next to the residential streets. There was nowhere else to turn but in to someone's driveway to go back to the church. She assured me that I was doing fine, and that we wouldn't stay on that street very long. I turned on the street and as I did a car got behind me, and I began to freak out. The plan was that I was going to turn into the next residential street. I knew the car behind me was going to get frustrated at my grandma driving speed! So I pushed on the gas pedal a little bit more than I wanted and began to turn the wheel. I over turned it though, and with my speed revved up my first reaction was to slam on the breaks. Good first reaction, but now it was just if my feet would get there quick enough. As I saw a light flash before my eyes and the pearly gates open up, the car stopped just inches away from a parked car. The car that was behind me came down the street as well, and stopped by us. Leaning out the window he told me I shouldn't be driving. At that time Kari got out of the passenger side and started driving back to her house. For a longtime after that Kari and I both said our hearts were racing at our stupidity. We could have both got killed or killed someone else. Crazy immature kid crap! Angels were definitely among us that day!

I know I probably sound like an obsessive stalker type for giving her her own post. I feel it was a big deal that she looked at me as someone she wanted to get know considering her popularity, upper classmen status, and good looks. She didn't need to be friends with me. Because of her friendship with me I feel as though she broke down a big wall for people to get to know who I was despite my physical disability. All of the cute jock boys knew that in order to date her they first had to be nice to me, BONUS! Being her friend taught me not to be so stereotypical about people and expect the worst. I made a lot of other friends that I wouldn't have even thought possible either. There are a couple other memories with her that I will share at a later post. At that time in my life she was the greatest, and thought she needed to be singled out. As I started my sophomore year she went off to college, and would see her sometimes. After college she got married, and our contact has become obsolete. I hope she is doing well, and is happy.

Is there someone that has impacted your life that you would like to share? I would love to hear about them.

Thanks for taking the time to read, Miss S

Saturday, December 16, 2006


It's come round again to start a new school and make new friends. I did not want to bring along with me my not so confident low self-esteem self. The first day of school is always the worst. My high school was much bigger than either one of my other schools. Which meant more kids. It was made up of two different buildings with two floors in each building, several prefab buildings (extra classroom's that are in a trailer like building), a gym, and a football stadium. Yes, and you might be a redneck if you had classes in a prefab building! Don't forget, this is Oklahoma! With it being bigger that meant that my classes would be farther apart from each other. My high school was not wheelchair accessible so I was the only student there with a physical disability. It was getting harder for me to balance myself off the walls while holding on to my books when walking. So the adaptation that was made at the beginning of the year was that I could have someone with me to help me with my books and to hold on to for balance while leaving five minutes early from class to beat the rush. I never felt intimidated by the teachers or staff. So not only did I have to fear not knowing where any thing was, making new friends, or being initiated by being thrown in the trash can for being a freshman (an urban legend to freshman). I also had other important things too like getting to classes, who was going to help me, getting my lunch tray, and just plain not falling! At least I had my brother around for the first two years of being there. He was a very well-liked guy to be around and was known as Opie (a young Ron Howard) from the Andy Griffith Show. His red hair was the giveaway! People often said that we looked alike. I don't think he appreciated that very well! He started driving during this time and would have to take me to school, help me to my first hour class, and take me home. So his little sister cramped his style, and held him back from cruisin’ a little. More than just my disability I feel, and mostly because of our sibling rivalry we did not get along. One of my neighbor's across the street, Melissa, was also going to be there. She agreed to help me during lunch. So everyday she would get my tray, and help me to my seat. I got to set w/ her and her friends. During the year they did the Just Say No To Drugs campaign. They did a skit about not smoking, and how it affects you. They asked me to be a part of their group!! I could not believe it. If there platform had been alcohol I could have been the drunk girl with no rehersal!!!!!! So we went to several elementary schools, and even my crummy middle school to put on the skit! There were several groups that went. Melissa and her friends never looked at me any diffrent! Prayers were definently answered as I could not recall the names of the people who had made fun of me in middle school on the first day. It was the weirdest thing. I still remember what they called me but can't remember who it was. I had forgiven those people, and was starting fresh. I was going to school with more mature individuals (or so I thought). Don't get me wrong that did not stop the teasing but it did seem to calm down. I would also talk about my disability more openly, and I think people felt more comfortable around me because of that.
There are several memories I would like to share with you concerning my freshman year. I will share these with you in the next couple of posts.

Thanks for taking the time to read, Miss S

Friday, December 08, 2006


Leaving middle school was like a breath of fresh air! That is one place that I did not care to repeat, although I do not regret anything. It helped to make me who I am. So during eighth-grade I began to get really involved in my youth group at church. You name it I was in it. It was time to sign up to go to youth Camp. Without hesitation or any kind of questioning about the accessibility I signed up to go. Until this point accessibility was never an issue for me. I do not even think that the leaders really thought about it either. When we got to Camp some of the roads were paved, but for the most part they were all gravel. The dorms we stayed in had these showers that you had to step up at least 2 feet to get to. It was a good thing I was not in a wheelchair yet because I would have been screwed in so many ways, because it was not set up at all that way. This was in 1988, and the American Disabilities Act (ADA) did not come into effect until 1992. So the campgrounds was not under obligation to be accesible at that time. During the day the youth would play games against the other youth. It was always something very physical that I could not participate in. Sometimes I would cry because of that. One time I got fed up watching everyone else so I decided to try this game that I thought would be easy for me. It was a tricycle race. Has anyone ever seen the movie "Revenge of the Nerds?" Remember the part where is the difference fraternities did the tricycle race, and each time they went around the track they would have to stop and drink a beer? Need I say more, LOL!! Every evening we would go to a service where the girls would all wear dresses and dress shoes. We would walk up this hill that was full of gravel. Having to wear and walk in dress shoes for me must have been what it was like for our parents, and grandparents to have to walk in the snow barefooted to and from school! I was still in that mode where I did not like to ask for help. By the middle of the week people started catching on that I was really struggling, and from then on I got to ride in a golf cart to the services. My friend Tonya took me under her wing, and would help me out in the dorm, get my tray when we would eat, and stuff. It turned out okay, but made me realize that I would need to plan more carefully with where I go and what I do. Doing things spontaneously is not the best option when it comes to doing things that are outside my home for a long period time. You live and you learn!

Thanks for taking the time to read, Miss S

Monday, December 04, 2006


This final stage started sometime after eighth grade began for me. I was tired of being depressed, angry, in denial, and living on a bargain that I wasn't sure would happen. I had done some serious soul-searching right before eighth grade began. I did not want to have or keep the bad attitude I was holding on to. I prayed about not wanting to live like this any more. These next three memories helped me significantly as far as accepting what was going on with me, and having confidence on who I was.

The first was when I was in English class, and we were learning how to conjugate sentences. The class was asked by the teacher to make up a sentence, and to share it with the class if you wanted. The teacher would write it on the chalkboard, and as a class we would conjugate it. I sat next to one of the girls I went to church with. I showed her my sentence to see if she thought I should share it. My sentence was "I have a disability called Friedreich's Ataxia." People from my church knew what was wrong with me. I never spoke of it though to any one. I do not know what came over me. My church friend thought it would be a good idea to say my sentence. So I did. I felt very nervous, but raised my hand. As I said my sentence it went silent in the room. The teacher gave me a double take as she asked me to spell FA. I think I shocked everyone including myself. The teacher asked me what FA was. I told her and the class what I knew, and this time I left out the part about getting hit by the tornado when I was born! At that moment I felt that I did not have to hide behind a story anymore. Just being able to talk about it openly with the others gave me confidence. Some of the teasing did stop for some people had an explanation as to what was wrong with me while other people knew it didn't get to me like it used to so it was pointless.

The second memory happened shortly after. In middle school we had a morning homeroom class that we would go to hear announcements, study, or to talk and have fun. There was probably 15-20 kids per room. Everyone had a playful rival for the other homerooms. Every now and again we would have contests and stuff between each other. Only eighth grade homerooms got to participate in a little game called Wheel of Fortune during this time. Each homeroom had to designate a student to play the game. Our homeroom played each other to see who would get to be the person to represent. You will never guess who made it in our homeroom? Me!! I loved the game and would kick butt on it at home, but couldn’t believe it was me! There were about six people playing against me from other homerooms to win a trip for the entire homeroom to see the courthouse in Oklahoma. I am sure the other students from my homeroom were thinking the worst about sending me to represent our class. What pressure! The eighth grade homeroom classes filed into the auditorium. I was so nervous about having to get up out of my chair to walk over to the microphone to guess a letter that I didn't even think about the puzzle. I would have been more nervous if Pat Sajak or Vanna White were there! Thank God I never fell. The auditorium was full of people watching us. My homeroom was setting in the front, and I could see them good. One of the guys in my class knew the answer and mouthed it to me. It was very funny. The puzzle was "Bill of Rights." He knew by the look on my face that I read his lips and knew the puzzle. We were all just waiting for it to come back around to my turn when J Lo and behold for it did! I answered the puzzle and our class won! I wasn’t in any way popular, but felt people not looking at me like I was only known as the drunk. I even got myself in the local newspaper! That made me feel good. I was just hoping while we were at the courthouse they did not stop and arrest me for not being able to walk a straight line! LOL.

The last important memory of my eighth-grade year was being a student teacher for a day. One of my favorite teachers in middle school was Ms. Teresa. She taught science and she was so nice and pretty. She did not remind me of what I thought of when I pictured a teacher. She had long blonde hair, and a nice figure. She dressed very in-style (for the time), and not all teacher like. So I signed up quickly before anyone else to teach her class. I got it! She had five classes during the day. I was very nervous about standing up in front of the class. Ms. Teresa setup the plans for the day for me to show the class a video half of the class time, and the other half was to answer questions about the film out loud. She discussed the plans with me before so that I would be okay with it as well. I told her I did not want to do any thing on the chalkboard for my chicken scratch was horrible! I never would have thought that I would even enjoyed being a teacher, but I found it not to be as intimidating as I imagined. Students already respected her as a teacher, and because of that I felt they didn't act up with me like I thought they would. Not to mention my voice does not have a lot of authority to it, so I expected to get walked over more than I did. I still did some, but not to the extent I was thinking of. I wore a dress with dress shoes the whole day, and again I never fell! The experience of it all was great, and it gave me a better appreciation for what teachers deal with day to day. However, it did not inspire me in anyway to want to be a teacher. Having these three positive experiences in my eighth-grade year let me accept the fact that I had this disability. I even let my guard down a few times to ask for help in walking. I was a very independent person who did not like to ask for help. I would just hold somebody’s arm for balance. I would do this more during the end of the day as I was tired. The students who would help were not bothered by this for we got to leave class 5 mins early to beat the rush. Other students would come up and ask to help just so they could leave class early. KIDS!!

Due to the fact that FA is slowly progressive, and has many symptoms I have never been able to completely stay in the acceptance stage. It is a never ending cycle for me, but the initial acceptance of having a disability made all the difference in the world as far as things that are going to happen. FA is not only rare, but everyone is different. There has been things that have happened to me that have not happened to others. All in all it still sucks! I still make time to laugh though.

What are some of your best memories that taught you something about who you were? Thanks for taking the time to read, Miss S