Saturday, January 27, 2007


What a time of reflection, and a time to say "What in the heck was I thinking?" Where do I begin! I guess I will start with my fashion statement from my head to the toes.

The bigger the better! We used to call the waterfall look to my bangs the doener! Aqua net hairspray was my best friend as it was the only thing that would hold my hair so stiff that nothing could tear that baby down! For a couple of years I tried to go with a short hairdo. But needless to say I looked like Raggedy Ann as she got her finger stuck in a light socket! Several years ago as I was visiting my friend Jen I showed her some pictures of me back in the day. I showed her one when I was sporting this hairdo. She could not get over how hilarious it was. We call it the JT hairdo because it is like Justin Timberlake's hair when he was on N'sync. The group was popular at that time when I showed her the picture. I would sing, "It's gonna be me!!" That's all I have to say about that!

THE CLOWN FACEI started wearing makeup in sixth grade (85-‘86). I did not have a makeup trainer, and it showed! I was all about the blue eye shadow, and liquid foundation that I would use so much that it would leave a mark on my chin line. I was also wearing eyeliner and mascara. I know what you must be thinking, How do I still have eyes right? Even the mascara was blue. Forget the fact that I was a drunk, I think this was the real reason I never got any boys!! That's all I have to say about that!

THE WARDROBEAs far as the clothes arena goes the fashion police probably would have arrested me! I wore the long t-shirts that I would bunch to one side and weave through this jewelry thing. I don't even get that, but okay! There was no way that my mom would fathom the idea of spending $60 on a pair of jeans for the triangle label that said “Guess” on the back pocket. But one of my Aunts worked at a thrift store, and they had a pair of bright green carpenter guess jeans. Instead of the triangle logo on the back it was a little rectangular patch on the knee of the pocket. You had to be up close to see it. They cost me two dollars, and I wore those pants until I could wear them no more! I have long legs, and after a few washes I was wading in some high water, but that did not keep me from wearing them! And when I wanted to “get physical” Olivia Newton-John style I had some leg warmers and sweat bands! It was cool to own a pair of jelly shoes. I had a hard time walking anyway I do not know what made me look cool in jelly shoes. I also had a generic pair of Keds with the shoe laces that had the “totally awesome” sayings on them. I am still alive, and without therapy I might add! And that is all I have to say about that.

Music was even a bigger part of my life. As I would hold my tape recorder to my alarm clock radio so I could record the latest songs from Casey Kasem. Or sing along on my little Star Studio (Karioke machine). It was my refuge from the storm! Concerts were also an enjoyment for me to go to. My first concert was in 1986 when I saw Bryan Duncan, a Christian singer, with my youth group. I even got my picture taken with him at the time! He was a cutie patootie. I absolutely loved him, and saw him three more times in concert after that. I also had been to see George Strait and Clint Black during the 80s. It was awesome! It was around the time when YO MTV raps and hip-hop began to surface. My brother loved that. Two songs that I remember hearing that most was, "The Freaks Come Out at Night" and "Money, Money, Money, Money, Cash Money!" My cousin, who lived with us, was getting ready to go into the Army, and gave my brother and I a bunch of his stuff. He gave me his cassette by the group Poison called "Look What the Cat Dragged in!" I played that thing until the cassette tape broke. If my hair would have only looked as good as some of those 80s rock bands, LOL! I always thought Sebastian Bach from Skid Row’s hair was the bomb! Bon Jovi and his tush was up there to in my book!

In the movie category I was all in to anything directed by John Hughes. For example, 16 Candles, Weird Science, Pretty in Pink, and The Breakfast Club. There is more I know, but I cannot think. That was until 1987 when I put them in the corner so I could see Baby and Johnny have the time of their life! I was so obsessed with the movie Dirty Dancing that I remember buying a pound of peanut M&M’s, renting the movie, and watching it like four times in one setting while eating the entire bag of M&M's. The next morning I had the biggest zit on my nose. I wonder why? I knew that movie by heart, and had both of the soundtracks for it. I had the biggest crush on Patrick Swayze. I had five or six posters of him hanging on my pink walls! I bet I could have danced in a straight line with him as my dance instructor! I still show the movie my love and watch it every time I know it is on TV. I also have a DVD of it.

Most of my TV viewing pleasure was found on MTV, but there were few shows that I could not miss. My friend Tonya and I liked Doogie Howser M.D. so much that we would record it, and get several hours of it on their. The episodes would come on Wednesday night's when we were both at church. I would go over to Tonya's house, and we would watch it while sharing a big bowl of popcorn. On Saturday mornings I was starting the day getting my Zach Morris fix with Saved by the Bell! I also loved the show Life Goes On. Finally, someone with a disability gets an acting gig! LOL God love Corky!!

I cannot forget to mention that you were too cool for school if your locker in middle school was all decorated and guarded with a pound puppy. I also had a cabbage patch kid. Carrying the birth certificate around made me feel like a grown up!

This was fun reminiscing with you, and now it is to your turn to share. Thanks for taking the time to read, Miss S1

Sunday, January 21, 2007


Sometime in August MDA asked me if I would want to go to a fundraiser on behalf of everyone with neuromuscular diseases. They said that all I would have to do is just be there and smile. I agreed to go. I went with one of the ladies (Cecilia) who worked for MDA.

The fundraiser was something that the Jaycees had done, and they were holding a convention about it (and overlooking their whole year) at one of Oklahoma State University's buildings in Stillwater Oklahoma. For those of you who do not know much about the Jaycees it is a nonprofit organization held for men (back in the day) and now women 18-40 to help gain knowledge about business and everyday life. They do a lot of volunteering and service projects.

When we arrived their were about 350 people there. I was thinking that it sure was a good thing all I had to do was smile! Then Cecilia asked me if it would be okay to say a couple of words. I said, “You want me to do what?" She said thank you would be fine. I then go into freak out my mode! So we both when up to the front microphones. Cecilia did most of the talking about MDA and the things they provide. As we were standing up there everything she is saying sounds like an adult figure from the Charlie Brown cartoons! Yes I was standing. I didn't bring the wheelchair along. I knew we wouldn't be walking very far or very much. In my mind I looked more disabled when I was in it. I am sure I was paid more attention to with my drunken self walking instead of rolling! I had so many butterflies in my stomach from looking out over the crowd. Thank you was all I had to say, but I went over and over saying that in my head so I wouldn't forget! It was my turn and she was about to hand it over to me. I was not sure any thing would come out of my mouth as I looked out over at the crowd in fear. I got close to the microphone, and the words came rolling off my tongue like I had done it before. It wasn't that bad and felt kind of good being the center of attention in that way. I remembered what it was like in middle school when I won the Wheel of Fortune contest, and how it felt to be in front of all the other students. Can't remember exactly what I said, but it was more than thank you. When we left the stage I got tons of complements for doing such a good job. It made me feel so good. Cecilia told me that I looked like a pro and seemed so comfortable being up there! It all gave me so much confidence. We went from there to this really good pizza joint, and then stopped by the ever so famous Eskimo Joe's in Stillwater Oklahoma. I had an awesome time.

That day sparked something in me, and have been public speaking, been an ambassador, chairpersom, motivator, and doing volunteer work for the past 17 years for them! I have done some amazing things, and met some of the most amazing people. The list could go on forever. I will continue doing what I can for MDA. For all they have done and are doing still for me I feel that this is the least I can do to pay them back. Due to my FA my speech is effected. I sound like a little girl who got into her parents liquor cabinet! It has gotten worse throughout the years, but has not stopped me from talking! Just ask anyone who knows me!!

Tell me about something you enjoy doing, and the effect it has had on you?

Thanks for taking the time to read, Miss S

Wednesday, January 17, 2007


One week after camp…

I was so excited about the previous week that I was telling everybody. My friend Tonya wanted to hear all about it so we arranged for me to stay the night at her house after church on Wednesday night. So I wore my camp T-shirt and brought my annual so she could see it. There were no elevators to get to the upstairs to go to the youth room for the service, not to mention the steps were very steep (of course isn’t that always the way it goes!) So, after the service I grabbed Tonya’s arm and off we headed to go down the stairs. Only right before we began that journey I fell back and landed on the floor. I was screaming because I knew something was out of whack. I raised my head up to look at my body, and realized that my knee cap was not where it should be. All I needed was some help to straighten my leg so that I could pop it back into place. It had happened before, and I could do it myself but this time I was needing help. People were running to my rescue, Tonya was freaking out thinking she did something wrong, I was cussing, people were praying, and someone finally got a hold of 911! It was crazy. Meanwhile this guy who I had a major crush on gave me his Bible to rest under my head. Now I am in pain but got caught up in the moment of the sweet gesture. While he is probably hoping that God's Word would somehow seep into my brain to fix my language! No one would help me try to straighten my leg to pop the ankle back into place. They were afraid to screw it up even more, so we just waited on the ambulance. I do not blame them, although at the time I was not a happy camper! My grandma was also an onlooker who never left my side. Neither one of my parents were home. I did not know where my dad or mom was to get a hold of.

As the ambulance arrived they would not straighten my knee either, so they put something on their to stabilize it until I got to the emergency room. Tonya and her family, my grandma, and majority of the youth group met me at the hospital. In the ambulance it was the two drivers and myself. They had given me some laughing gas to ease my pain. We were having a good old time in the ambulance after that! I was telling some of the stupidest jokes that are gut wrenching funny when you are on something. Probably something like: What did one tomato say to the other tomato when it realized it was going to slow? KETCH-UP!!! ROFL, LOL! I remember those guys saying that they wished all the sick people they picked up were like me!

While I was on the stretcher waiting for the doctor I remembered where my Mom was. So they went to give her a call, and she was on her way. The doctor came in lifted my leg and popped my knee cap back into socket. I was like, “pop pop fizz fizz oh what a relief it is!” I thought I would just be able to get off the table and go on about my business. WRONG, due to the fact that my knee had been out of socket so long fluid had built up a round where the knee cap should have been. They put a knee brace on my knee, but even then I was not able to put pressure on that leg. My mom had gotten there at that time. Tonya and her family jokingly said to me, "If you didn't want to stay the night with us all you had to do was say so!” LOL.

For the next month and a half I wore that leg brace. Every day got better and I seemed to be able to put more and more pressure on it. It was like I had to learn how to walk all over again. My dad was so patient with me during this time. Again I felt I had no other option but to walk. I started my 10th grade year using the brace. After the first few weeks I would just wear it for security during school but take it off at home to gain confidence without it.

After going through the headache of borrowing the wheelchair again from MDA we decided that it would be a good idea to get my own wheelchair. This made me so completely sad, but again motivated me to fight to stay on my feet longer so I would not have to use it. The doctors were shocked that I was not already permanently using the wheelchair full-time. Some people think that going to pick out "a new toy" would make them happy. I am always sad any time I have to get "a new toy" because of my FA. I go through those five stages of grief again every time.

I have decided to not end this post on a sad note. So here is another joke for you: What do you call a ghost bee???? A boobee!!!! HEHEHOHO, ROFL! Don’t get me started!

It is your turn, got a joke to share? Or a trial in your life to share? I would love to hear. Thanks for taking the time to read, Miss S

Tuesday, January 09, 2007


David D. had a method to his madness when he brought Bobby Jo and I together. Not only was it for friendship, but also to encourage me to come to MDA summer Camp.

What is summer camp you ask?
It is a weeklong experience for those with neuromuscular diseases (MD) ages 6-21 years. It is divided into two different weeks, 6-12 year-olds and 13-21 year-olds. It is held at an accessibly friendly camp site where there are no barriers. We have a one-on-one counselor to help us with our daily tasks and activities. Everything is geared so that we get every opportunity to participate in the activities. You name it, and we can do it. There is horseback riding, power soccer, hockey, arts and crafts, talent shows, dances, fishing, boating, swimming, and the list could go on. I have never known one person who did not like summer camp. Even the counselors a lot of times get more out of it than the campers. Ask monkeyposh (aka Jen)? Memories and friendships are two of the favorite things that come from MDA Camp (I feel). This sounds like a great opportunity to do a plug for MDA summer camp!! So, if anyone is interested in being a counselor at summer camp you must be at least 16 years old. I know there is always a need for volunteers to be a counselor. You would not regret it, I can promise you that! If you are within the ages of 6-21 and have a neuromuscular disease I encourage you to go to camp if you have not already. From one former camper to one another it is a week of no worries and nothing but a good time! To find out where your local MDA office is to inquire about camp you may go to There is also more information about camp (by the by, it is free!) there!

After hearing all of the wonderful things about camp I still had apprehensions about going somewhere where I did not know anybody. My self-esteem was not the best, and felt there would be a room full of people to single me out to make fun of. Bobby Jo had been to summer camp several times. Knowing her really made all the decision easier for me to go. We would write back and forth, and she would share of her fun times there. Not only did I know that she would be there, but my friend Kari agreed to go as my counselor! Kari was also in the same business class as my brother, and wanted to go to camp before she knew about me. There would be too familiar faces there for me so my nerves grew calm, and now excited to go!

Because I did not own a wheelchair at the time David D. called on me to borrow one while at camp. I was not sure I was ever going to use it that week, but Bobby Jo and David D. kept telling me that the walking distances were far, and it would be good to have one around just in case. I was stubborn though, but agreed he could bring it. About two days before Kari and I were to get on the bus to go to camp I stubbed my big toe. This was a regular occurrence when I would walk without shoes. That was my stubborn streak yet again, because I knew better! Now every time I would step on that foot I would be in pain, and it through my balance off even more because I would try to use that foot less than the other. I began to cry and wonder about even going, but Kari gave me a pep talk and off we went.

The actual camp site in Oklahoma was about two hours from where I lived. So everyone that lived by me also took the bus. That was quite the experience for me. Majority of the campers who were going on the bus used wheelchairs. I was taken back and suddenly did not feel different. Everyone was very nice so far, and I was excited to see what was to come.

When we got to camp we met up with the other people from Oklahoma who were already there. We got settled in to our cabin. I was in a room with Bobby Jo as we had planned. Everyone met up at the mess hall. The first thing we did was to have a hug-a-thon. This is where everyone just hugs everyone. I was not a very affectionate person at that time so I was just kind of staying to myself. This counselor named Jason came over to me and gave me the biggest hug, and told me how glad he was that I came. I was so incredibly speechless. Not only was he a guy, but he was a cute guy! This just doesn't happen to me ever. From that point on I was the most affectionate person! LOL. Just kidding. We all went into the next room for dinner. I caught myself staring at this guy while he ate. He did not have any arms and was in a wheelchair. His counselor was feeding him. They were both laughing and having a good time. At that moment I thought to myself, "What the heck am I griping for?” He had to deal with so many more obstacles than I did, but yet he was still happy. I definitely reevaluated myself at that moment. After dinner we had a meet and greet party. When we returned back to the cabin for the evening I took off my sock and my toe was black and blue. It was a relief for my toe, and it was then I realized that David D. and Bobby Jo were right. So I swallowed my pride, and used the wheelchair when getting place to place after that. That was a huge deal for me and felt like I was giving up in a since. My stubborn mind was not focusing on the fact that it was safer for me, and would give me more energy to focus on having a good time. I later did realize that, but was not a happy camper!! Every year there is a theme for camp. This year it was called "making the difference" and one evening we all watched that movie "The Wiz" with Michael Jackson. This was when he was actually black! I even got an award for having the best Dorothy hairdo at the Talent Show! Throughout the week I learned how to laugh, give warm fuzzies (complements), to look at myself in a different light and realize that differences aren't always bad, to have confidence in being me, to have more of an open mind, and tons of camp songs. There was not one thing we did during that week that I could not participate in. What a feeling! Not only did I get to know Bobby Jo better, but there were tons of folks that I could relate to. I felt like I was one of the majority instead of being one of the minority. Near the end of the week we had a dance. It was so much fun to let loose and not worry about dancing with my two left feet! I had my very first slow dance with a boy! This was very different than the broomstick I was used to at home, LOL! We danced to the Richard Marx song "Right Here Waiting." Could I have a moment so that I could reflect on that one, LOL! On the last day everyone was filled with the emotions of leaving. We all took time to sign annuals, take pictures, and give many hugs. I had promised to stay in touch with everyone. I never thought I could have had this much fun, and have met as so many wonderful people. I left with anticipation of going back the next year.

My life was forever changed by this. I ended up going to camp for five more great summers. I will talk about them in a future post for I have rambled on long enough about my first summer at camp. Truly, there is not enough room to say what I want to say. Blogger would give me the boot if I tried!

I would love to hear about your camp stories? Thank you for taking the time to read,
Miss S

Wednesday, January 03, 2007


A couple of months after my surgery MDA set up another clinic visit for me during the time that another girl with FA was going to be there. This was not a surprise to me, and I was very nervous. I was thinking, Is she going to act like me? Is she going to talk like me? Is she going to walk like me? All I knew was that she was my age (15) and had FA. When my mom and I first arrived at the clinic we saw someone in the waiting room, but we were not sure if it was the girl I was suppose to meet. The girl was in a wheelchair, and I didn't think that was her. So we just sat and waited for David D. (patient service coordinator for MDA) to introduce us. He came, and then we all met. It was her. Her name was Bobby Jo, and we were both not very talkative to one another at that time. I did not mean to, but I did stare at her. In my mind I was trying to answer those questions I had been thinking about. My mom was full of questions for her Dad. I could not get over the fact that she was in a wheelchair already. I did not really realize that there was different onsets, and that everyone is different in the way that their symptoms react. I felt because we were the same age we would be on the same page as far as our FA goes. Her diagnosis was several years before mine and she had quit walking at the age of 11. Even though we were in different progression stages of FA we were the same. I was not alone, and had someone I could relate to for the first time in my life. Because of that we had an instant bond. We lived in different towns, and knew we wouldn’t get to see each other often. We ended up exchanging home addy’s (no email yet), and became a gossiping duo! I saw her every summer at Camp from that point on until we were 21. That following winter Bobby Jo passed away. I was sad to lose a friend, and even though her passing was not due directly to FA (it was a bad case of pneumonia I think) it made me wonder. But I know I have to keep going and going strong for everything happens for a reason.

Thanks for taking the time to read, Miss S

Monday, January 01, 2007



My mom called the MDA as soon as she got the business card from my brother. The first thing they did was sign me up for a neurologist at their clinic. After checking me out the neurologist referred me to a orthopedic surgeon who specialized in back surgeries. The neurologist was quite concerned with my scoliosis (curvature of the spine). The orthopedic surgeon made me feel so comfortable. He was so nice and personable. He told me I had a 54% curvature in my spine, and that he could do a procedure that would correct it as much as possible. I never felt it was curved that bad. Not my old neurologist or even my family doctor at the time was concerned. Not anyone since the elementary school nurse. Although I did know it was curved some because of the teasing I got about being a "hunchback of Notre Dame" in middle school. The surgery was new at that time, but the surgeon had done this several times already successfully. I am not sure what the exact procedure is called besides scoliosis surgery. They put these metal rods (called CD Rods) in my back to hold my spine up straight. I would not need a back brace or any thing to wear after the surgery. I trusted him, and agreed to do it.

I went in the hospital during the week of spring break. The day before I was scheduled my friend Kari spent the night at my house. We stayed up late, ate pizza, and watched E.T. on video (VHS). On the day of the surgery I kissed my parents, and was wheeled from my bed into the ever so cold operating room. One of the nurses came beside me to help me stay calm. All I could see of her face was her eyes for everything else was covered. She had very pretty eyes and long eyelashes. She was also wearing a nice smelling perfume. We were chattin about that stuff when a mask was rudely put over my face! I was told to countdown from 10. Of course, I did not make it and went to sleep. After four hours of surgery the doctor came out to tell my parents that everything went better than he expected. He was able to correct my curvature to 23%! He did not think he would get it corrected that much. When I woke up my eyes were almost swollen shut, and my mouth was like cotton. My mom said my dad was a nervous wreck, and wanted to make sure I was not in pain. I had an IV that would send me pain medication when I pushed a button. It was time released so that I could not overdose on it. My dad knew the schedule, and my mom said he was always going up there pushing the button! It was a couple of days before I even tried sitting up. This is when I really learned that privacy was thrown out the window. From getting sick, going to the bathroom, and taking a shower it was crazy. It was another realization for me not to sweat the small things, and that it is okay to have help. I ended up having a big scar down the middle of my back. I keep thinking I will set off the metal detectors at the airport! This scar makes for a good conversation piece. I usually tell people it was a failed attempt of being cut in half! I spent two weeks in the hospital. I had lot's of visitors. Friends from school this time came, my family, and youth group. I felt very loved. My favorite class was Spanish. Mrs. B’s (Spanish teacher) husband was a very talented and sweet man who made for me a poster that everyone who wanted signed from school. They also had a spring dance the Thursday before spring break began. I did not go and Mr. B had taped it for a senior video he was making. Mr. and Mrs. B brought the video and poster up to the hospital. He rigged up the TV, and showed me the video! It was very sweet. I cannot forget this guy that my brother would pick up for school every day that I thought could have buttered my popcorn quite well If you know what I'm talking about!! He came to see me, and got me the Debbie Gibson cassette! I was thrilled and was such a cheese ball that I dedicated the song from that cassette “Lost in your Eyes,” to him (I am still 14 at this time don’t forget!). I was also in the hospital during Easter and got several Easter bunnies (stuffed animals). My cousin made me a big bucket of noodle nests! I am not a big sweet eater, but love these things. It is like these Chinese egg noodles, and you pour white chocolate over them, and make them into a nest then put jelly beans in them. I haven't had any in a couple of years, but I can make myself sick eating them. Enough about those, but I may be able to talk to my cousin and get the recipe if you would like. They are very easy. Let me know. During that time I was in hospital my grandma (mom's mom) also had went to the hospital. My grandma had lung cancer, and made several trips to the hospital during the past couple of years of her life. We both ended up leaving the hospital on the same day. So we set it up to meet each other in the lobby, and have a wheelchair race! Just kidding.

I knew the road to recovery would be very long, and sometimes painful. It was like I had to learn to do everything differently than I did before because my balance had shifted due to the fact of the surgery. Even getting comfortable sleeping was weird. My grandma (dad's mom) stayed with me while mom and dad worked during the day. Learning to walk again was rough, but there was no other option in my mind. I had to get my strength up so I could return back to school. My dad was very patient with me in helping me to walk. It was then I knew that my days of walking without help of a wall, person, or rail was over. I think I was at home two weeks before I started back to school. I only went half days for the first two weeks. During spring break they had moved my history class from the farthest prefab building to the main building so I wouldn't have far to travel. The great thing about my high school was their support of me. The faculty and staff always made me feel wanted. I was still in my typing class for the first period, and they had rolling chairs to sit on. I had sat on one and it tipt backwards when I leaned on it onto the concrete floor. The teacher felt so bad, but surprisingly it did not hurt. With every passing day it got better and better. If I am in the right position you can feel the rod sticking out of my right shoulder blade. Sounds gross I know, but it does not hurt. The surgeon told me that I what eventually probably need to get the rod restraightened. It horrifies me to think of going under the knife again for that, and dealing with the recovery now that my progression is worse.

Several years ago I went to a orthopedic surgeon for some bursitis in my back. He did an x-ray of my back, and told me that everything looked fine. I was happy to hear that. Everyday (almost), I try to keep my back strength up by doing a stationary hand bike. I think it helps.

I would love to hear your scar stories????????

Thanks for taking the time to read, MISS S