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

Wednesday, November 29, 2006

THE DEPRESSION STAGE (I don't care anymore)

I can kind of refer to this stage also as the rebellion stage. I didn't care what anybody thought any more. When I was made fun of I grew numb to hide my feelings. In addition I also became more reclusive. Spanky was no longer with us and had went to doggy heaven. My grandfather (Moms Dad, and I was close with him) also passed away, so I was dealing with these 2 losses as well. This was around 7th Grade.

My parents never made a big deal out of those things such as smoking, drinking, or fighting with me. We all had more important things to be concerned with. My best girlfriend from elementary school and I hung out every once in a while still around this time. Especially when it came to trying the forbidden no-no’s. One day she came over to my house. My parents were both smoking at that time, and I knew where they kept their stash. They were of course not home so we decided it would be fun to try it out. We each took a pack, and proceeded to smoke 5 or 6 cigarettes one after the other. I got lightheaded from doing this, but most vividly I remember that I smelled so bad. The stinch that came from my hand alone was enough to choke me up. Yes, I admit unlike former President Clinton that I did inhale, although it was weird so I mostly just puffed! At that time neither one of us cared for we thought we were cool. Just like the other smokers that we would see next to this old church across the street from the middle school. Now I may have thought I was cool, but there was nothing graceful about me trying to even hold a cigarette let alone light it! That did not stop me, although my habit did not last long as I tried to finish off my pack in my bedroom by myself, and with the door shut. I ended up burning a hole in my carpet! So I may have been depressed, but I was not dumb enough to continue. I never got caught though!!! LOL It was her turn this time, and a little alcohol consumption was the plan! So we went to her house and shared a can of beer. It made her sick, and me walk straighter! HEHE From that point on our friendship became a mere acquaintance as she became really good friends with the bully down the street. As I have said before, everything happens for a reason. A year or so later my friend ended up pregnant (woops). On to this bully, I am not sure how long she lived down the street from me. I do remember her being in fifth grade with me in elementary school. She is the only person I would ever call a bully to me. Nobody else ever touched me they would just make me feel horrible. She chased my wobbly running self down the street so she could smash whip creme in my face. Although, it tasted good it did not make me feel very good. I was scared of her. I tried to stay out of her way. Now that I look back on it she was probably the one who needed help. She would treat her younger brother terrible. It seemed that she only felt empowered when she could take advantage of someone else. One day in middle school we just happened to have the same wood shop class. For some reason unbeknownst to me she took my purse and dumped the contents out on to the floor. This was very embarrassing for me, and thank God I did not have Feminine Hygiene products in there at that time! I did not want her to know how I felt so I just picked up my stuff and went right over to her. I told her that was uncalled for and that she better not do anything like that again. She asked, "What are you going to do about it hit me or something?" So I just whaled back and hit her on the upper arm. Now I can't hit the broad side of a barn, and so I have no idea what I was thinking besides the fact that I did not want her to see me sweat! I think it hurt me more than it did her. She just hit me right back on the upper arm. Yes, it hurt like a Mo Fo, but never let my facial expressions change! She egged me on to continue so I did. I think the fist fight only lasted a few more punches because the teacher saw us and broke it up (Thank God). We were sent to the counselor's office where she threatened to suspend us for fighting. She asked the bully to leave the room, and then told me she was extremely shocked and should call my mom. I told her to go ahead and call. That this girl lives down the street from me and has been a bully to me every time we cross paths, and that I was going to take up for myself from now on. The counselor did not call my mother (I told her about it, but never got in trouble), or suspend either one of us. The bully and I did not cross path's very often after that. She either skipped school a lot or was suspended. I do not even think she went to high school with me. It is all water under the bridge now, and it did not ruin my whole childhood. We were stupid kids then, and I forgive her.

I am sure there were more stupid things I did during this time, but these are the three things that stick out in my mind. I am so glad I did not staying in that stage for more than a year. I have no regrets over anything though. Let me know some crazy stories when you were that age (between 12 and 13). If you dare to tell!!

Thanks for taking the time to read, Miss S

Next post: The Acceptance Stage

Monday, November 20, 2006


I am back and feeling better. Thank you for your patience!

The transition from the anger stage to the bargaining stage did not seem to act different. Instead of having all this anger toward God I would bargain with him a whole lot. For example, I would promise to go to church every Sunday if he would not let my disability progress any further. Or I would promise to read my Bible and pray every day.

Let me back up to fill you in on my Christian background. My parent's both went to church when they were younger, but did not continue as they got older. My dad’s Mom went to church every Sunday and Wednesday. It was very important to her to share the love that God gave to all of us, so she would take my brother and I to church with her on Sunday mornings. We tried several different Assemblies of God churches. I was about eight whenever we found a good one. It had lot of activities for children. My Grandma wanted us to go somewhere where we could be involved. Not too long after we started going there I gave my heart to Jesus in children’s church. I did so many things while I was there. When my brother and I were teenagers we were given the option of wether we wanted to keep going to church or not. My brother unfortunately did not stay, but I saw something there to stay for. I felt so comfortable being there, and so unjudged. I enjoyed it so much I would sacrifice being even more awkward by wearing dresses, and walking in dress shoes! That was the biggest bargain. That even makes me go hmmm!! It was a big church, there were five or six people who I went to middle school with. Although, since I was not the kid to associate with I was often passed by at school by those people. I do have an exception, there was a girl who I also went to elementary school with that was also at middle school. She never wavered from being my friend, and would often be the girl I would set with at lunch or hang around. Her name was Tonya. We are still really good friends. Her family is awesome too!

Back to discussing the bargaining stage: I would often wonder if I had the name brand clothes if that would make me have more friends or have more confidence about being different. I would try to bargain with my mom by doing extra chores or something but she refused to give in to the expense for clothes. She felt like Wal-Mart or K-Mart clothes were as good as any other. So not only was I known as "the drunk", but I also was stylin' with the blue light special! She did not grow up with a bunch of money, and learned to be satisfied with what she had and felt we should do the same.

Thanks for taking the time to read, Miss S

Next post: the Depression stage (not caring anymore)

Tuesday, October 17, 2006


After my sixth-grade year it seemed as though one thing after another was going wrong, and I was beginning to think I was to blame. My wonderful Aunt got married to a wonderful man that summer. It was a beautiful ceremony, and was documented with a camcorder. After the wedding my family gathered together to watch the wedding. This was the first time I had ever seen myself walking and interacting with others since my diagnosis. My dad had a moving camera that was given to him by his mom, so I had seen myself when I was smaller on that camera. I was sitting at the top of the small staircase as the VCR began to play. I was always "the ham" when it came to taking pictures. My family knew this all too well, and when I got on camera they would say, “there you are!” Thinking that I was more than thrilled to be the center of the attention. I was unaware how I would look. It was a raw look at what other people saw when I looked at me. “Is that really me?,” I thought. My head was spinning and my eyes were tearing up. I wanted to crawl in a hole. I hid my fillings from my family and tried to act as though nothing was wrong. It was then I began the anger phase. I questioned why me, or what did I do to deserve this. I even found myself angry with God. I cannot remember a time when I was angry at my parents for carrying the gene. I often would ask my mom if she knew this was going to happen to me would she have had me at all. Her and my dad always said the answer was yes. Middle school was hard enough to deal with, and to tack this on was horrible for me. The way you looked, acted, dressed, and talked was important to fit in. If those factors were based on passing or failing I would have definitely failed. Not to mention that your body was going through major changes anyway with puberty. I was not the apple in any boy’s eye. I was more like the worm that would make the apple rotten! Why me during this time why me, was never an answered question for me. This phase lasted for a good year. I was not wanting to answer questions from other people when I couldn't answer questions for myself, and so I still remained to myself.

Looking back now I know that everything happens for a reason. Thanks for taking the time to read,
Miss S

Next post: the bargaining phase

Wednesday, October 11, 2006


Living in denial had became easy for me to do as that is just what I did before when I saw the signs, and so did in my parents. My parents and other family members began to look at library’s, and in medical journals for information about Friedreich's Ataxia (This was in 86, before days of the internet). They came out with not much more information than they had been given from the neurologist. So not too long after the search began it ended thinking they knew everything they were going to know. No matter how much more they found out it wasn’t going to erase the fact that it was what I was. There was and still is no cure for FA. I cannot even imagine what must have been going through my parents minds as the doctor told them it is genetic, and that both parents have to be carriers of the gene in order to pass it on. I do know that my parents racked their brains trying to trace back in their families of anyone else who had FA. They came up empty-handed. Guess I was the chosen one, lucky me right? I was spending most of my time after the diagnosis being in denial. I remember watching a TV movie with my family that was about a little girl with cystic fibrosis, and the struggles she endured while living with it. She passed away at the end of the movie, and I just cried and cried. I was still confused as to what was happening with me, and I went over to my mom and laid my head in her lap telling her that I did not want my life to end that way. She just padded, and kissed my head reassuring me that everything was going to be Okay. She was telling me that my disability was different than that girls was, and that if she would have known It was going to affect me this way she wouldn't have let me watch the movie. No one from school came to visit me while I was in the hospital. I am pretty sure that some of kids and teachers knew, but weren't asking. I withdrew from a lot just so I would not have to talk about it. I remember wanting to be a cheerleader or pom pom girl so bad. I would memorize their routines and come home doing the cheers in the backyard where only my biggest fan, Spanky (our white, medium sized poodle who loved being outdoors) could see!!!!!!! I tried to act as though nothing were wrong. I was still going over to the girl’s house across the street. She was at the age where playing was what mattered not how I looked. Because I was in the denial stage for a while before the diagnosis it did not linger as long. It was the summer after my sixth grade year that the anger stage took over.

Next post entry: the Anger stage

Thanks for taking the time to read,
Miss S


I remember learning of the five stages of grief in my sociology class in Jr. College. If you are not aware of the five stages of grief or what they are let me tell you. A change of any kind of circumstance (FA is mine) which produces a loss = a reaction of grief. Elizabeth Kubler-Ross identifies these stages in her book as 1. Denial (not me) 2. Anger (why me) 3. Bargaining (promising to do better if…) 4. Depression (not caring anymore) and 5. Acceptance (ready for whatever comes my way). Due to my disability being slowly progressive, going over these stages in my life is a never ending cycle. Once I think I have accepted what has been given to me something else creeps up to deal with. Having to go constantly through these stages has made it quicker for me to get to the acceptance stage. Not only that, but my outlook and heart has changed a lot since then also making it easier to transition through those first four stages.

In these future posts I will share with you what I went through during these five stages of my diagnosis.

Thanks for taking the time to read,
Miss S

Tuesday, October 03, 2006


As I entered into the neurologist office on a cold Monday morning in 1986 I was really afraid of what he was going to tell me. It showed as I squeezed my mom's hand for comfort. He asked for us to go straight to the hospital, and that began the week I would never forget.

My mom stayed with me the whole entire week, and my dad would come after he got off work. My brother would visit after he got out of school. I got lots of games, coloring books, crossword puzzles. Anything to try to keep me occupied. I got lots of get well notes. My favorite was the chocolate chip cookie bouquet brought to me by my hairdresser dressed up as a clown! Being 12 that brought lots of smiles to my face.
I felt very loved during this time.

The testing did not begin until Tuesday morning, and we were told by the nursing staff that my first test would not be until 9:30 a.m. Breakfast was brought me at 7:15 a.m., and at that time my mom told me that she would go down to the cafeteria to get herself some breakfast then come eat with me. I was watching TV until she got back to finish my breakfast so we could eat together. A couple of nurses came into the room pushing a wheelchair and calling my name. I told them I was her. They proceeded to tell me that they were to get me, and take me to one of the testing room's. I told them I was waiting on my mom to bring breakfast up and eat with me. I also told them that we were not aware that anyone was coming until 9:30 a.m. They told me the times had changed, and that I was the first appointment at 8 a.m. They did not even think that a 12 year old girl would be frightened to go anywhere without her Mom in those circumstances. I stalled them the best I could by telling them to let me finish breakfast, and by that time my Mom should be back. I was eating slowly as they stepped out of the room only to return about 5 minutes later. They told me that I was going to be late for my appointment, and that I needed to go with them. I did not want to go anywhere without my mom, but they assured me that they would let the nurses station know where I was so they could tell my mom. Reluctantly I went with them which made me even more nervous than I already was. They took me on the elevator, and did not share any information with me about what was going to take place. I was wheeled into a room with big machines and a table lying in the middle. A doctor directed me to get onto the table. I told him that I did not want to do anything without my mom. He said he would tell me and show me what he was going to do to let me know that it was not going to hurt. He told me that he was going to be placing a needle in different areas of my body and wanted me to push against his hand. He then said "see I will do it to myself to show you that it does not hurt." Right at that time he looked up and said that he didn't have time to show me (how convenient). He stuck a needle in my leg and then had me push against his hand. It was so painful, and I was screaming for my mom. My mom told me she could hear me screaming from the elevator. She came running in with the most calming doctor. Dr. Pepper! She had me to take a drink and calm down. I could not quit crying, and kept saying "no more." He did finish much to my dismay. I am still not completely positive what that test is for. It was an electric shock for muscle biopsy or something. All I know is that it hurt like hell. Don't forget this was in the mid 80s, and I only hope and pray that technology has gotten better to where other people do not have to go through what I went through. I was so exhausted from doing that test and being so upset that it wore me out. I had a hard time staying in focus.

I went from there into another room where I did several different tests. None of them were as intense or painful as the previous test. I remember having to watch a dot on the TV screen while having all kinds of electrical hook up things stuck on my head. What a fashion statement I was at the time, having a backless gown and a bunch of sticky stuff in my hair! Due to being so exhausted I had to redo a test a couple of days later where they put my thumb into a little holder, and would send electric shocks to make my thumb twitch. I was not very happy about that, and knowing that I could not take anymore they let me go rest for the night. They told me that the remainder of the tests were not as bad. Yeah right I was thinking. I believed that about as much as I believed that monkeys could fly out of my butt!

The next several days consisted of more tests. I had this one blood test done where they drew blood and insert gases. I thought I could have my mom pull my finger afterward to relive myself! Instead it hurt very much so. Drinking a bunch of yucky stuff was a remember able moment. I had a spinal tap. The hardest thing besides that it hurt during, was that you had to lay flat on your back for several hours. Last but not least I had an MRI done. I had more tests done but those are the ones that I remembered.

The neurologist came into the room after all the tests were completed and looked over. He told my mom and I the fateful news that I had Friedriech's Ataxia (FA). He said that both parents have to be carriers in order to pass it on. That it is slowly progressive and would eventually confine me to a wheelchair. My question to him was "am I going to die." I was not understanding and probably did not want to understand at that time. To understand meant that I would have to deal with it. He did not have the best bedside manners, and did not go into a whole lot of detail about it. He did tell us that he had a good idea by my actions, and the way I was walking into his office on Monday morning what was wrong with me. Of course he never said anything until he had to proof, but he ended up being right. So he had an idea of what he was looking for, and that helped him out a lot. I still felt screwed over, confused, and scared.

Thanks for taking the time to read,
Miss S

Monday, September 25, 2006

MORE SIGNS (Cont., but the final entry for Signs)

The summer before my sixth grade year I ended up not doing majority of the physical activities that I had done before. It all started to become more and more difficult. My confidence level was not the best. I stayed close to home. TV became a great source of entertainment for me. I would still go to the neighbor's house but not as often. This was also the age when boys and girls don't “play together” anymore. I began to hang out with one of the girls across the street. She was about six years younger than me and was still in that play/pretend mode. I was not ready to move on so we would “play together” a lot. She was an awesome friend, and still is. Her whole family was/is great. Transitioning into Middle School for me was very difficult. I went through most of my sixth grade year not being diagnosed yet. Change is so hard for me, and I was taken out of my comfort zone big time. I went to a small Elementary School where you knew everybody. As I began Middle School I found myself in classrooms with other kids that I didn't even know. There were 4 different Elementary Schools that would send their 5th grade graduates to the Middle School. Getting to know a whole new group of kids, and them to know me and my different ways seemed scary. During this time it was not cool to hang around “the drunk” as I was often referred to, because of my lack of balance and coordination. I was holding on to walls or railing even more than before. To get off school grounds from the front you had to walk down a whole bunch of steep steps without railing. I tried it a couple of times, because I am a hard head. It makes me nervous just think about it. I would take it so slow and concentrate so hard. One time my balance was so unsteady that I just sat on the steps to breathe and get my focus back. I did it though, and that made me smile! I also started to show signs of scoliosis (curvature of the spine) which became a target to be called “Hunchback of Notre Dame.” The way you look and act becomes very important during the middle school days. I had problems in both of those areas. I would often sit by myself at lunch, and get teased on a daily basis. Kids can be so cruel, and I would often let it get to me. I became a depressed loner. I was the only student who had physical issues there. I was showing more and more signs that this was more than just something I would grow out of. When other students would ask me why I was clumsy or about my back curving I would tell them that I was hit by a tornado when I was born. This makes me crack up, and they believed me too! There was a tornado when I was born. My Mom said that everyone in the hospital had to go to the basement (I was about two weeks old at this time), but no it did not hit me! If I had known that the kids were going to be so gullible I would have told some juicy stories, like I was raised by a pack of wolves or something! LOL! My mom started back to work, and quit PTA or helping out when I started Middle school. As I think back, my parents wanted to believe what my pediatrician had told them, and not that it could be more. If I were in their shoes I would have done the same. No one wants to think something is really wrong with their child. Especially after the doctor has done some tests and they pointed negative. But it came time when we knew something serious was happening. My pediatrician also agreed, and referred me to a neurologist…. stay tuned to see the results on the next post!

Thank you for taken the time to read,
Miss S

Monday, September 18, 2006


I LOVE THE 80’s! (First half)
Even though I was born in the mid 70s I spent most of my rememberable childhood in the 80s. What a great time it was, I can just close my eyes and be brought back to that time. I am excited to share these mischievous and funny stories with you during this time of my life. In almost all of these stories you can see the signs of my disability. None of them made me stop doing what I did, and it would sometimes make me fight harder to achieve them. I was very blessed to have had several childhood friends. They looked at me no different than anyone else.

I loved to be outside, and my imagination would not stop! I was quite content playing outside in the backyard with our dog Spanky (Jughead ran awayL)! I was always climbing trees, riding my bike, and making mudpies with the boy next door, Mark! He brought out the tomboy side of me. There was a swing set in my backyard and we would play like it was a ship and we would climb to the top of the slide to look out over the water. We even drew a map, burned the edges like it was worn, to make it look like the one in the movie Goonies! One-eyed Willie was who were looking for!! We also loved the movie Clash of the Titan's. I have no idea what was going through our heads on this one! He would be Perseus and would kill the scorpions and cut off Medusa’s head with his fake sword and shield. All to rescue the Princess Andromeda (played by me) from the beasts. My best girlfriend at the time and I would play on the swingset for hours jumping off the swings pretending we were in the Olympics for gymnastics. I always would give myself a perfect 10 like I was the next Mary Lou Retton!!!!!! Both of them had above ground swimming pools. I was a fish! The water made me weightless therefore you couldn't tell that anything was wrong. “Marco Polo” was the ultimate game! There was also a public pool at the park down the street. My brother and I (my mom made him walk with me, hehe) would go over there sometimes daily during the summer. My family and I decided to take a trip down the river on none other than an intertube (it was a special river just for that kind of stuff- no fishing)! As we began our float we felt the cool breeze as we were going at a nice speed. All of the sudden the water started getting shallow. We were forced to pick up our intertube's and walk on the rocks until we reached a good amount of water to where we could begin to intertube again. We ended up having to do this several times. I had a hard enough time walking on a flat surface let alone carrying a intertube on a bunch of wet rocks. It was crazy but all in all I am glad to say I did it. I could not have done it without my Dad’s help. Going fishing was another family function we did often. We had a boat, and would go cat fishing by the dam at the river (not at the same place where we intertubed). I caught a few fish in my day! Getting in and out of the boat was not the most graceful thing I ever did, but again am glad to say I did do it. Dind't I make quite the fashion statement too!! I loved going to amuseent parks. Walking all drunk there everyone thought I looked normal like I just got off the tilt a whirll!
Jumping rope and playing hopscotch were two other activities that I enjoyed doing even though I was not the best at them. My best girlfriend and I loved to play tetherball so much that we improvised it so when we got home from school we could play. We would take a plastic pumpkin that was used for trick or treating tie a long piece of rope on the handle for the tetherball, and placed it somehow on a pole. We would play with that for hours. If I wasn’t doing those things I was at practices for my sports. My main chore was to keep my room cleaned. It was my brother's responsibility to mow and rake the backyard. One time I insisted that I wanted to help. It then became my responsibility to rake. Why did I ever open my mouth? It did not last very long for I had a hard time doing it, and would be out of breath pretty quickly. Our backyard was big. I remember going to see the movies E.T. and Gremlins at the drive-in movie theater. In the winter my other neighbors lived on a big hill, and we would have a blast sliding down it and having snowball fights. I loved to make the snow angels and snowmen! I did not let rainy days or Mondays get me down! There was always something to do or something to make up and do. Being mischievous was what I was meant to do. I also enjoyed playing by myself at times. Yes I had imaginary friends, didn't you? (We know that Kelley did, hehe) I used to love watching Little House on the Prarie, and it would inspire me to play school with all my imaginary friends. One fateful day I decided to use my wall as a chalkboard and wrote in pencil (like I thought that would fade, LOL) all over it. As my punishment I was given a big eraser and told to get busy. It was harder than I expected (go figure) so I stopped erasing and started crying. I lived with that writing on my wall till I was a teenager. It made me learn my lesson for sure. My parents took guardianship of my cousin when he was a teenager and I was 3. It was like I had another brother! He introduced me into the world of music television. A couple of years after he came MTV started. My favorite video was Thriller by Michael Jackson, and I learned to look cool like Madonna! My first cassette I bought was by the group Heart, If looks could kill was the name of the tape. My mom and dad had records, (Country and Oldies, which I both love) and my best girlfriend's parents had an 8-track player so I was familiar with it all. The boy next door had some 45’s of Jessie's Girl by Rick Springfield, and Sunglasses at Night by Corey Hart that we would play air guitar too or just look cool with our sunglasses on and the light off! My cousin, brother, and I watched MTV all afternoon along with wrestling. You didn't want to mess with me, because I could do the DDT (that rhymed)! My brother and I would bend wire hangers to make a hoop and put it up on his door, and practice with tennis sized balls to make baskets. I would jump around with a long towel wrapped around my neck trying to save the day just as I saw wonder woman do it on TV. My best girlfriend and I had the biggest crush on Ricky Schroeder from the show Silver Spoons. When Atari came out we had a fight on our hands (not literally) to see who would get a turn to play Pac-Man, Frogger, or Pong. There could be only two players at one time. My mom was also an avid player, so she would normally be one player and one of us kids could be the second player. My hand eye coordination was not the best and I would not win very often, but still loved to play. My Aunt was a school teacher for a magnet school in Oklahoma, and she would always take me to their school plays and musicals with her. I really loved that kind of stuff, and enjoyed watching all of the musicals on TV (still do) like Annie, Wizard of Oz, Sound of Music, Grease, Little Shop of Horrors, and many more. I was never into the whole Barbie scene. The two Barbie’s I did have I cut their hair off, and that ended my collection of Barbie’s. I did however love my strawberry shortcake baby doll that when you pushed in her stomach she would blow you strawberry kisses! I went to the rolling skating rink lots. Whether I was doing the hokey pokey or singing Celebration by Kool and the Gang, I had a blast. I would always either hang on to the side railing of the rink or hang on to someone for balance (usually knocking us both down). A lot of times I would skate on the carpeted floor next to the rink. It was more comfortable to me. Falling is usually a common practice when skating for anyone. So when I was there I did not feel singled out due to falling! I even tried ice-skating once, and once was all it took!

It has been so much fun sharing with you about my childhood in the 80’s. It is now your turn to share or comment on some of your mischievous and funny stories from when you were a child. Do not hesitate I would love to hear them.

Thanks for taking the time to read,
Miss S

Saturday, September 09, 2006

FALL '79- SPRING '84 MORE SIGNS....- Elementary school [edit*]

This is pics of me during those school daze (see 3rd-5th below). L to R: Kindergaten (I liked my shirt), 1st grade (looking rough. All I wanted for xmas was my two front teeth, and a decent hairdo!! What kind of mullett is that anyway?), 2nd grade (I am a cool 2nd grader)

I was blessed to have gone to the same elementary school the entire time. It was a couple of minutes away from where we lived. It was small and in an area where you knew just about everyone. My mom was really big into PTA and was always at school helping out. I was not the most academically known, but I could hold my own. My actions started becoming more noticeable with each passing year. My mother knew a lot of the staff at the school, but no one inquired about my clumsy action's at school. As I look back there were plenty of signs. In first grade I smashed my right finger(the bird) on my neighbor's door. It turned black and blue, and puffed up big. I concentrated harder because of it, and colored the best picture. It was all in the lines and everything! I got a good grade on it. I wish I still had it. I remember getting coffee sometimes for my math teacher in second grade. It was a big deal at the time, and our teacher would pick different students every time to go into the break room and get her coffee. When I would go I would never fill the coffee cup all the way up. I would still spill some of it while walking back to her desk. My brother and I did our homework at the kitchen table, and when we were done our mom would check it over, not only for mistakes but also for legibility. As you can imagine my brother was always out the door before me to go play outside. I was always having to redo my papers due to my handwriting. Something that mom looks back on and feels bad for, but it helped me to keep a halfway decent handwriting even throughout high school. I was always the last person to get picked in gym class. It was so discouraging, and I had no explanation to give for my actions. My gym teacher probably saw the most signs of any of them. I don't remember the exact grade I was in may be fourth or fifth-grade but for some reason a few girls (Kelley, I think you were one of them?) did a choreographed routine in an assembly (I think it was to promote exercise and how to have fun while doing it) to the song Rhythm of the Night by Debarge. Because I would’ve made a fool of myself on stage (rhythm was not in the night, morning, or afternoon for me!), I was in charge of the record player. I ended up not being able to set the needle down on the record smoothly enough and I scratched it during one of the practices. It did not ruin the record, but it made the gym teacher mad. He yelled at me to not touch the record player again. I ran out of the room crying. The only thing that concerned the nurse was that I was showing the beginning signs of scoliosis (curvature of the spine). I even went to see a specialist about it. I guess it was not a big concern to them, because I did not go back after that. There was one thing I did excel at physically while there. I was the best in the school at the arm hang! My gym teacher gave me the nickname Spidee at the time because of the arm hang. I felt like I was on top for once. I even had a boyfriend (whatever that means) during 4th and 5th grade. He was the class clown and we were on again off again (It was a complicated relationship!). Holding hands was the farthest we got. He asked to kiss me behind the school building in 5th grade. It freaked me out so I broke up with him, LOL! During 5th grade I was chosen to be a cross guard. To prepare for the job me, and the other three 5th graders who were chosen had to go to a training session. Since my mom was on the PTA she volunteered to take us. It was 2 guys and 2 girls. Jennifer and I paired up to do the training. In the CPR class we would practice on each other (rated G folks, no mouth to mouth!). So I had to lean down, and listen to hear if Jennifer was breathing. I slobbered on her cheek!! AWWW MAN, I was so embarrased (we have talked about it recently, and she still remembers!!!!). As a cross guard I would stand at the crosswalk and go out into the street putting my hand straight out to the side to stop the traffic so students could pass by. It made me feel so good. The streets were not very busy. Scary to think about me doing that then though. With my mom always volunteering at school and being involved in the PTA people knew we were dependable and would give it our best shots. This gave me the edge to be more choosable in some areas. As far as the overall acceptance from other student's of me being there had its ups and downs for me. Most of the time it was up, but I definitely had those moments of feeling embarassed. For example, carrying my tray to the table at lunch or even writing on the chalkboard was hard and made me be the center of attention. I did not like being stared at and during those times I was. I was reminded of my differences everyday. No one was harder on me than me. If there was teasing and I am sure there was, but it does not stand out to me. I was very rarely sick or missed school.

L to R: 3rd grade (I am pacticing being the beaver in the school play!), 4th grade (Can u say Half Pint?), 5th grade (Like my grade I plead the 5th)

Overall I would have to say that my elementary school experience and was great. I would love to hear about your experiences been an elementary school.
Thank you for taking the time to read,
Miss S

Saturday, September 02, 2006

80-85 MORE SIGNS....(CONT.)- SPORTS [edited]

Everyone in my family played sports, and I wanted to as well. With my balance and coordination affecting me I was never the star player or anything, but I would give it my best shot.

I played outdoor soccer for three seasons. I was part of two coed teams and one all girls team starting at the age of 6-10.

1980 River Rats- We layed our heads on the West side of the river. Clever name huh?

I am not exactly sure what year this was but I think 1981. We were called the River Rats! My coach Ronnie told my my Dad once that he had never seen someone who is so tough, that just takes a likin’ and keeps on tickin’!

1984 Wings- "We got it all, its heart and soul!"

While I was on the all girls team our coach, Joyce, choreographed doing our warm-up routines to the song "Heart and Soul" b y Huey Lewis and the News! I still talk to here every now and again, and we both agree that everytime we hear that song it puts a big smile on our face:) Her and my mom were the best of friends then. My mom filled in as a substitute coach during a practice on the all-girls team. She gave us an exercise where we had to run around the field backwards. I would take a few steps, look behind me, and would fall. My mom thought that I was just being lazy and thinking I could get away with it because she was the coach. So she made me do it even though I kept saying that I could not. After every few steps I would fall, and my mom would spank me until I finished going round the whole field. At the time she was showing me tough love by not letting me get away with not doing it when everybody else had to. She feels bad for it now but I understand the reason she did it. It’s something that we can look back on and laugh. If it wasn't for her I would not be able to say that I did it.

1984 Park Cherubs- We were #1, and dont you forget it!! Good grief, look at my socks!! I know my momma taught me how to dress better! I was just being hard headed I'm sure. Those shorts they made us wear, SHEESH! I look like I should be on the video for "Lets get Physical" by Olivia Newton John!!

I played basketball for a couple of years for my elementary school. I was often a bench warmer, but was proud to be on team. Wearing the uniform alone made me feel important. The coach would always put me in when we were ahead. One of the strong players, Kelley (The pic isn't that embarrising Kelley no need to close your eyes!!) , would always pass me the ball so I could try to make a basket. I did everything I knew of and that ball would never go in. Thank you Kelley for allowing me the opportunity to feel needed as a team player. Many Hugs to you (Sorry for the shout out, but I had to). One time I got fouled and was given a foul shot. It rolled around and around the rim but never went in. I think everyone in the place was rooting for me to get that basket. My dad told me later that even the referees were hoping I would make it! Another time, I was reaching to catch a pass as the ball hit my finger and jammed it. With tears streaming down my face I begged the coach to let me stay in and play.

The last sporting event I tried was in 1985 for being a batgirl for the girls softball team when I was 11. The same coach for basketball was also coaching the softball team. She knew what a hard time I had with basketball and came to talk to my parents about me being batgirl so that I would still feel part of a team. It was extremely thoughtful and something I took a part in for a while, but I do not think I continued doing it for a whole season. My heart just wasn't in it. At this time sports were becoming very discouraging for me and no longer fun. Running for long distances was beginning to make me tired and out of breath. I was becoming more self-conscious about the way I looked. Dont let the pigtails throw you off, cause I was still.....
BAD TO THE BAT!!!!!!!!

I am very thankful for having got to do these things. I miss being part of a team, but everything happens for a reason, and the memories will last forever. Signs were everywhere and in everything I did sports wise. Let me know of some of your favorite sport memories whether they are young or old? I would love to hear them.

Thanks for taking the time to read,
Miss S

Friday, September 01, 2006


When I was 6 years old my bro and I got bikes from Santa Claus, and we were both so excited! My bike had a banana seat with multi-colored daisies printed on it, and a white wicker basket with plastic colored daisies that was hung from the handlebars. It was the bomb, and I was so proud to have it. It came with training wheels that I used for a couple of years. My parents would adjust them every couple of months or so until finally one day I had enough confidence to ride without them. Even though I could keep my balance on the bike I would have to concentrate harder than everyone else while doing it. I could never let go of the steering wheel, even though I had tried believe me! For about a week I would just drive on our driveway which wasn’t that big. Then my mom decided to take me down the street to ride. The street had a pretty big slope to it which made me nervous. Mom assured me that she would be holding on to the back to give me support and would not let it go. I think this is something every parent says when teaching their kid how to ride a bike. Of course, when we started down the street mom had hold of the bike. Then soon after, she let go of the bike and I was on my own. When I realized this my feet went off the pedals to the side and I start yelling. Because I was on a slope I was rolling at a pretty good speed, and I ran into a bush! My mom helped me to get out of the bush thorns and all. Like my parents always told me, if you fall get back up and try again. That was just what I did, but that was not the only time I crashed and burned. There were hundreds of times, but not enough paper to mention all of them.

One other one I have to tell about happened shortly after the one I previously told you about. With practice, I was doing okay on the slopey street. Due to my confidence, I decided to give it another whirl! Only this time as I began to go down the street a car started coming up the street. The smart thing would have been to stop where I was and waited for the car to go by, but I was not smart. I was concentrating on too many things all at once like the car, where I was going, and most importantly keeping my balance. I ended up falling off my bike and skinned my knee up really good. There were two elderly women in the car. Seeing this all take place they stopped their vehicle, got out and asked me if I was okay. They asked me if I would like a ride to my house, and I told them no that I just lived round the corner and I would be okay. I did not know the ladies, so they told me they would at least go to my house to tell somebody I fell on my bike and was injured. They left and I grabbed my bike and started walking home. When I got home, of course my mom doctored me up with peroxide and put on a Band-Aid. Dad told me that when the ladies were at the door that they said "Your son fell off his bike around the corner, and hurt his knee really bad. You have done a good job in raising him, because he would not get in the car with us when we offered!" I had the ever so famous pixey hairstyle (real short) which I did not like, because it made me look like a boy. I had just gotten it cut like that a few days before this took place. So, all I did was grip about my hairstyle looking like a boy. Isn’t it ironic! Of course, that did not end my days of bike riding. The boy next door and I were always going on little dirt bike trails. Picturing the image of my ever so masculine bike on the trails cracks me up! On a couple of different occasions I spent the night with my best friend in Elementary, and we rode our bikes to school (she lived close). Around the age of 11 is when my physical problems started getting in the way more so than before. It was then I quit riding my bike, and it stayed in the garage:(.

Yet again, several signs made themselves known. I am so thankful for all of these memories. They all put a smile on my face or a tear in my eye from all the laughter:). What about your memories? Do tell???
Thanks for taking the time to read,
Miss S

Sunday, August 27, 2006


Looking back through those younger years it seems as though things should have been caught sooner as to my disability. Especially due to the signs I showed, and the fact that the signs were not getting better only worse. If we knew of my diagnosis sooner I think my life as a young child would have been very different. I wouldn't have wanted to trade the way I grew up for anything. My parents always encouraged me to always do what I wanted, and if I fell to get back up and try again. Opportunities for me to have done some of the things I did probably would not have been done. For example, riding a bike, climbing trees, playing outside, playing sports, and doing some of the things in Elementary school. Everything happens for a reason. One of the best opportunities was being a child in the 80’s! I have a feeling that this could be a lot of entries that are continuing of the title due to me going into detail about some of these opportunities. Hope you enjoy!

Noticing the differences…
I never thought of myself any different than the other kids, although I was aware that there were physical differences. It was around the age of five others started seeing differences in me also. Nobody really had an understanding as to why I was clumsy or off balance and the other kids weren't. Even my pediatrician was convinced after doing some tests that I was just growing fast and was at that clumsy stage, and eventually would grow out of it. The first noticeable difference was that my balance was not very good. My dad said he remembers me pulling up from a couch and not letting go while I finished walking to where ever I was going. It was like I was afraid to let go. My brother never showed signs like this at that age. Because he did not see that happen all the time it was overlooked, but as he looks back now it was a sign. From the time I can remember I held on to anything and everything when walking. Remember when you were younger and walking along to not step on a crack or it just might break your mother’s back? Well I had my own version to try and walk as straight as possible to not break my mother’s back. I was in gymnastics between the ages of 6 and 7. Our team would go to meet's and perform in front of judges. I was afraid to do the balance beam, after trying it several times, for fear of falling. The only exercise I was comfortable with was the floor exercise. When we would go to the meet's I was always given the Honorable Mention Award. It made me sad that I was never given a higher award, but I never did quit because of it. Looking back now that too was a sign.

Thanks for taking the time to read,

Miss S

Saturday, August 19, 2006

1974-1977 IN THE BEGINNING...... [edited]

It all began during tornado season in Oklahoma. That was when I first began to voice my opinion (which hasn’t stopped!). I came a month early, because of my weight I stayed in the hospital for about 15 days. Dad said I was so small that I could fit in his shoe box! I was a pretty content little girl who would just eat, sleep, and poop! I became part of a family with loving parents, a two year old brother, and a basset hound named Jughead!

As I began toddling I did not seem to be delayed during those memorable firsts. Like the first time I sat up, crawled, or walked. It seemed as though nothing was going to get in my way especially those little white plastic tabs on my diaper. My mom said I used to pull those tabs off and stick them up my nose! To keep me content all you would need to do is set me down with a big pickle (it still works too)!! This is one of my favorite pictures of my brother and I. Weren't we cutties? Wonder what happened??

At the age of three I contracted H-Influenza meningitis. I had to spend 12 days in the hospital on antibiotics to clear up the infection. Up until that time I looked well-nourished, but lost all my baby fat after that. I was growing tall, and staying skinny!

I would love to hear any interesting and am embarrassing stories you have of when you were a baby. I told mine, and now it is your turn!

Thanks for taking the time to read, Miss S

Monday, August 14, 2006

1974-? What is really in my dash?

I hope this finds everyone doing well. I am excited for this is my first blog! I give all the credit for the tagline to this blog to my friend Parisjasmal. She was the person who not only put the idea of doing a blog in my head but she thought of the most perfect name very quickly. She thinks quick on her feet (maybe that is my problem!) Many hugs to you. Thank you very much. Check her out at She cracks me up!!!

Hi, you may call me Miss S! Many of you have probably heard the story and meaning behind the dash. For those of you who have not, the dash represents who you are and what you were in this world. When you're gone and have moved on what’s in your dash that is what you are remembered for. Sharing what is in my dash so far is something I have wanted to do for quite some time. I wanted to write about my emotional feelings and actions during my 30+ years of living with Friedreich's Ataxia (FA). A rare, genetic, and slowly progressive nerve disorder that I was diagnosed with at the age of 12. It affects my balance, coordination, fine motor skills, and muscle strength. It is also a form of Muscular Dystrophy (MD). FA does not define who I am by any means, but it has been a huge obstacle in my way that continues to be. For example, I was homecoming queen, have lived on my own, driven a car, got a college degree, had several jobs, and have done many more things despite my disability that I will all share with you about in detail later. I am not a doctor so medical advice is not my forte. You can do anything you put your mind to. The mind is such a powerful tool. I also wanted to share about my life to give others with FA someone they could relate to. Since FA is rare, it is not common to know others with similarities. It was 4 years before I met someone with FA, and the instant bond we shared was indescribable. Throughout my life these are some of the most important lessons I have learned: Laughter is the best medicine, not to sweat the small things, and not to feel bad in asking for help when needed. Your attitude means everything. I am not claiming to be a cheery person all the time. I have my moments like everyone else including those "why me" moments from time to time. When I get frustrated with things I tend to cuss, clean, scream into a pillow, workout, listen to music, or write. Geez, that sounds like I get frustrated a lot! Not every time I do those things am I frustrated (especially when I scream into a pillow, LOL!) at myself. Like the saying goes, there is no use in crying over spilled milk! Laughter is the best medicine, and I am the first person to laugh at myself. That is how I keep my sanity. If I stayed frustrated at myself for all my actions that are beyond my control I would be a miserable person. Even I wouldn't want to be around me if that was the case.

I hope you enjoy my blog entries. Do not hesitate to leave me a comment or to share something about yourself. For those of you who are interested in finding out more about FA you can go to or

Miss S