THE ANGER STAGE (why me)

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

THE DENIAL STAGE

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

DEALING WITH MY DIAGNOSIS

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

MY DIAGNOSIS

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

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

MORE SIGNS (CONT)...I LOVE THE 80'S (1ST HALF) [edited]

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

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

ELEMENTARY SCHOOL

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

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

PLAYING SPORTS....
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

MORE SIGNS (CONT.)- RIDING A BIKE

RIDING A BIKE....
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

1977-1980 SIGNS, SIGNS, EVERYWHERE THERE'S SIGNS!! [edited

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

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

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 http://monkeyposh.blogspot.com/. 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 http://www.mda.org/ or http://www.ataxia.org/.

Miss S