What's in my dash?

Checking in

2009-06-08T13:08:00.000-07:00

My comp is pretty much toast. I finally got my photo albums to sc an then comp crashed. We managed to get the internet and email. I have no VD (Voice Dictation, LOL) and there isno way i can type a lot without it!! I just ordered a new comp and it should be here soon and i will b posting soon.

THE DELAY...SORRY

2009-04-16T08:40:00.000-07:00

This is a post that I should have written a long time ago. Too much time has gone by the for me not to say anything. This is the skinny!! Around Thanksgiving (in November) we did a room makeover for me. It consisted of painting the walls (desert camel is the name of the color, very pretty and very eloquent), moving around furniture, getting new furniture, and getting rid of a lot of junk! We have most of the furniture put into place. The problem is that when we painted we had to move everything in to the spare bedroom, which includes my photo albums! I knew this was going to happen so I ended up scanning some camp pictures before everything was moved thinking that by the time I was ready to start my next post I would have the albums back. But I was wrong, dead wrong!! If I could do it myself it would already be done. That is one of the many challenges I face on a daily basis having FA. Having to be dependent on others! Patience is a struggle here!! Not everything will be done when I want it. I am very blessed to not have OCD along with the FA!! I have not spoke of this yet in my dash because I haven't gotten this far in my story but I have Voice Dictation software (a.k.a. VD, LOL). It is where I put on a headset and talk into a microphone and it types for me! There is no way I would be able to do my blog without it. It gives me so much independence to be able to write my blog, writing e-mails, I have an online support group for people with ataxia, myspace, and facebook. I spend a lot of time frame on my computer (I bet you can guess that)! So I will say it loudly and proudly, I love my VD!! Please be aware that it is a man made product and does not dictate perfectly! So if you find errors throughout this blog that is why, it is not me LOL! I also did not write regularly last year at my blog but things have been crazy. I have had two heart surgeries, and a list of other issues. This year is going good for me besides the fact that I really have not been posting lately. I miss it. So that is the skinny! I have not forgotten my blog. I will leave you with some pictures of my room. It looks bare here and is fuller now. These pictures were taken before Christmas!
My good friend Jen fixed me up with some awesome bedding from The Company Store. (Do not look under the bed for there are monsters!) This beautiful dark brown coverlet is perfect for this Texas weather because it is not too heavy like a comforter. Along with the very cozy flannel sheets.

My sister-in-law was really the mastermind in helping me to decorate. We put curtains up instead of the french closet doors I had. It makes it look really nice and gives me more room to wheel in.

So I had to throw in the nice HD flat screen TV that was mounted on the wall.(My parents got me one for a Christmas gift).

This was actually taken on Valentine's Day this year. My Wonderful friend Jolene gave me these tulips. They were setting on my window seat, and I thought the light from the window captured them so pretty. It is one of my favorite pictures.

So that is all about my happenings. I look forward to getting back into the swing of things. As far as posting again. I will do soon.

Thanks for taking the time to read, Miss S

MDA SUMMER CAMP REWIND- 1990

2009-01-18T13:14:00.000-08:00

This theme this year was “Back to the Future.” Each day we’re presented a different place in history. Sunday was caveman day, Monday was medieval day, Tuesday was 60s day, Wednesday was 1776 , Thursday was space Camp, and Friday was Time warp. We would do activities pertaining to that day’s theme. Awards would be given out everyday for the messiest cabin and also for the cleanest one. Camp songs and warm fuzzies, were also an everyday occurrence!

The first day that we were there (caveman’s day) we all got in a big circle and played a name game that required quick recall. The picture below shows us playing the game. Try not to get distracted by the girl’s hair in the corner of the picture! SHEESH...it looks like CRISPY Mall Hair.....and you know she was keeping Aqua Net (in the purple can) in business with that mess. Her bangs look like a bird's nest for reals. EEEEEEEKS! Dr. Bobell would pick on people to try and get them to smile, and when they did they had to name everyone in the group that they could (I wouldn’t have been able to it). Dr. Bobell was trying to get Wes to smile but he was not going to break so he thought he would just set on his lap! I for sure would have would have been showing some pearly whites at that point!!!!!

This next picture was taken out the waterfront. It is in such a distance that I cannot tell who any of the people are but it gives you a good view of the canoes and stuff. By there is also paddled bloats. Normally a little ways further is where guys would normally fish. They were also picnic tables and stuff where people could shoot the breeze! The waterfront now has been built up and is a lot nicer.

This picture was taken at the waterfront. I do not know how or why but all of us Divas were nicknamed Trash! Julie, me, Jen, and Carla. If we liked you, you were also crowned as Trash by us! It was too funny. The only Trashy Diva I speak to now is Jen. Even though we live many miles away from each other we still manage to talk trash all of the time.

Say cheese Josh! I hope he doesn’t spill that drink on his camera for Josh was the cameraman! He worked at a Photoshop in the mall. He was so nice and would volunteer his skill to take some pictures throughout the week. He did not take the group pictures, but some of the others. I stay in good contact with Josh and have gotten to see him for the past couple of years at the *MDA adult camp retreat at the same campgrounds! He is also the gentleman who puts that on!! A big warm fuzzy to you Josh! He was definitely Trash royalty, LOL!

This picture was taken by Josh on the day that we took the group photo. It is of me and my counselor for that year Carla. I really like this picture. It is one of my favorites, for I look completely able-bodied like there is nothing wrong! That year was the starting point to having a great friendship with Carla that lasted about four years. You know how it goes, some go one way and others go another. We never did pick our friendship backup and because of that Carla and I have not spoken in over 10 years. I hope she is doing well.

It is time for the talent show. It is always a night filled with laughter! I will never forget the skit put on by Wes and Steve (my prom date) doing Hans and Franz from the SNL skit. They were prepared to “PUMP, YOU UP!” They were never thought of as “girlie-men” again! Thanks to myspace I am still able to keep in touch with Wes. Steve is no longer with us as he lost his battle with cancer a couple of years ago.

I am not exactly sure what we are doing at all in this interactive skit, but if you look closely in the background I am standing with my arms wrapped around some dude. Try again not to distract yourself by Wes’s paint on pants! I cannot remember the name of the girl with dark hair but in the picture I can tell that Justin was sure enjoying himself! HEHE

As we end for this year, it is always an emotional time and we want to hug everyone several times before we depart. Time for one more picture with Benji (standing), myself (standing), and Bryan. I remember that year I had a big crash on Benji. Thanks to Jen for giving me this picture. I do not talk to either one of these guys anymore. I would love to know how they are both doing.

Even though we went back to the future, time just flew by! Thanks for taking the time to read, MISS S

*The MDA Adult Retreat is not affiliated with the Muscular Dystrophy Association.

Next post: MDA summer camp rewind -- 1991

MDA SUMMER CAMP REWIND-1989

2009-01-11T18:21:00.000-08:00

Some may say you cannot go back in time, but in my dash I say I can!! If American Idol can do it (Idol Rewind) I can to! I know I have only mentioned about my summers at Camp in the past. I did not have a scanner until last year and I had to be very selective about what photos I did end up scanning because I was using the library’s scanner. Now that I can scan any and all the pictures I wanted to do a little rewind so you could see (and with a little more detail about the weeks happenings!). I could just go back and put them on the posts from long ago but I figured they are not many people who go into the archives and just check everything. Summer camp always meant the world to me and I wanted to be sure everybody got a chance to see. So for the next 5 posts I will be giving you a look back at my time at MDA summer camp…

Before I begin talking about what happened that week I will refresh my readers about summer camp. MDA summer camp was held for individuals with Muscular Dystrophy who were between the ages 6 to 21 for a whole week. Ww would each have a counselor. There were two different sessions one for ages 6 to 12 and the other session was 13 to 21. It was held in Guthrie Oklahoma at the Oklahoma Christian Camp. At the time it was one of the most accessible and barrier free places I had ever been. It was free to campers and counselors for the week. I gained so many different things from having attended. Friendships that will never end and memories that will last forever. I met one of my closest friends during my first year at summer camp(that was 20 years ago…EEEEKS). I love you Jen! I am also still in touch with quite a few folks thanks to e-mail, myspace, and facebook. I have also gotten the joy of going to the *MDA Adult retreat that started over 2 years ago. (Many warm fuzzies Josh!!) Even though some folks have come and some folks have gone, we are always family! Camp helped my self-esteem sooo much as I was one of the majority instead of one of the minority.

I am saddened to say that my cheap camera broke the first week of camp. My friend Jen tried to send me some photos that she took but could not get them to do right. We did not have digital cameras then, and were working with the little disposable ones a lot. Here is a picture of my counselor, Kari, and I that was taken before summer camp. Kari went to the same high school as me. I was always envious of her. She was so pretty. She could make wearing a T-shirt look good! Look at her T-shirt then look at mine. They are the same shirt just different colors. (I have a post on here in 1989 that is dedicated to her.) I unfortunately do not talk to her anymore. We lost contact about 13 years ago:(

You might not be able too make out real good just by what the annual says. Since I lived in Tulsa my counselor and I loaded a bus that took us to the campsite in Guthrie. The theme that year was “Over the Rainbow”. There were different colors every day. During the middle of the week we would put on our camp T-shirts that would normally apply to the weeks theme and take a group picture by the waterfront.

At this time I was not in a wheelchair but rented one for the week. I tried not to use it all the time, and was told that I was very independent. I had a hard time asking for help. The first night we were there we watched “The Wiz” with Michael Jackson and Diana Ross. I think we all gave it a big two thumbs down. On the first full day I got the bonehead award. The bonehead was like a headband with a bone sticking out of each end. You had to wear it all day and not be caught without it otherwise you would have to go around the mess hall as everyone sang a song as you went. The bonehead award was just given if someone (normally a counselor) did something clueless! I locked myself in the bathroom accidentally at the MDA office as we were coming to camp! It was funny and I was glad that everybody else could find the humor in it and not be hesitant to giving it to me. What a way to start out your first year of summer camp than by getting the bonehead award (I think this was the last year they did that too)! We also gave out warm fuzzies, which are complements given to anyone (everyone got one) from anyone (they still do that). I cannot forget the many hug-a-thons we had throughout the week. Besides family members hugs were not a normal in part at all in my daily life. When we first did a hug-a-thon I was a little overwhelmed with all of the hugs I was getting! By the end of the week it was one of my favorite things. Camp would not be camp without camp songs! They were the best! Majority of our early afternoons were spent at the waterfront trying to fish (mostly the guys did that) , canoe, or do the paddle boat’s. Afternoon’s we would go to the swimming pool. Camp was on Fourth of July this year so we watched fireworks, ate ice cream, and had watermelon! On one of the night’s we had a talent show. The talent shows were always a big deal because they were hilarious not to mention that some people really did have talent (that does not include me). This year the skit that sticks out in my mind was the one where Eric D. and Heath T. dressed up like a lion (Eric was the head and Heath was well you know!), and the rest of their boys cabin sang, “The Lion Sleeps Tonight”! It sticks out for 2 reasons: 1. I was rolling, and 2. THEY USED MY SHEET TO BE THE LION!!! Talented friends would end the talent show by singing “Friends” by Michael W. Smith. They handed out awards and I got one. Don’t kid yourself it was not for my talent but because I had the best Dorothy hairdo (hence the theme)! One of the days they had a carnival where you could go to different stations and do different things. One of the things was that they held mock marriages! Yes, I got mock married! The lucky guy was Heath. He is the goof in the group photo who is hanging from the tree. Below is a copy of our marriage license and the ring that he designed for me out of yellow pipe cleaner! Now that is love! But the love did not last long for I have not heard from him in about 13 years!! HOW RUDE!!!! I would love to hear from him again and ask him what went wrong!

There was a dance the last night there. All of the girl campers were asked to be dates with guy counselors and the same thing with guy campers and girl counselors. This was a big deal because campers find it very rare in getting the attention from the opposite sex. My date this year was of course my mock husband Heath! We danced with everyone though. This is where I experienced my first slow dance or just a dance period. One of the songs I remember dancing to it as “Right Here Waiting” by Richard Marx. I was dancing with a very cute guy named Wes and he kissed me on the cheek. I will never forget that and think of that every time I hear that song. Saying goodbye to everyone was the hardest, but the anticipation of the next year started as soon as we got on the bus to return.

Hope I did not bore you to tears with all of that. Going to camp was one of the greatest times. If you had an unforgettable moment at Camp or elsewhere I would like to hear?

Thanks for taking the time to read, Miss S

*MDA Adult Retreat is not affiliated with the Muscular Dystrophy Association.
Coming soon: MDA summer camp rewind-1990 (with more pictures!)

5/27/74- 21, AND WHAT WAS I THINKING!!!!!!!!

2008-12-26T19:58:00.000-08:00

I know, I know, it has been a while since my last post. My deepest apologies, I will not feed you excuses like where does the time go…BUT REALLY, Where does the time go??

As I began this story I must start out by saying that we have all done stupid stuff when we were 21. The title here could not be any more correct. But again this is in my dash so I will share. Thank God he forgives!!

Above is a birthday card that my brother got for me. He put $3 in it so I could legally by my first drink! I got a margarita on the rocks with salt, and I needed it as you will see…

I woke up to the sound of my dad singing me happy birthday that Saturday morning. I knew that we were going to a redneck country bar that evening called HOOTS to celebrate!! When we moved to Texas from Oklahoma in ‘94 our cousins friends became our friends. We had been to HOOTS several times. My mom loved going when they had karaoke! I had gotten to know the owners, and majority of the people who worked there. I also made friends there. Not friends that I still hang around with but nonetheless they had good intentions! HOOTS was not a very big place nor did it fit the mold as being the best example for accessibility! Every table that was in there was high. They only had room for one pool table, and a really small dance floor that pretty much was never used because the dart boards were there. Getting ready and dressed for that evening was something I did a little throughout the day. That was my normal routine because everything takes me to twice as long. I wore a blouse that my cousin Debby got me for my birthday. We were also celebrating my brother’s birthday as we are four days apart, from two years that is. A bunch of us meet there, and of course one of the guys brought his VHS camcorder! One of the things that I found really odd about Texas was the fact that you do not have to be 21 to get into a bar/club. You cannot drink, and you must have a guardian with you at all times. Maybe not everywhere in Texas, but for the most part I guess so. So a four-year-old girl was brought along. Everyone knew what was about to take place besides me! There was about 20 to 25 people to join my brother and I’s celebration. So we are all just talking and I had my back to the door. This country looking guy taps me on the shoulder and started speaking on loudly as though I was hard of hearing (Karaoke had not yet begun). He says, “Do you remember me?” I say no. So he said “You came up to me at the grocery store and touched my butt!” I knew exactly who he was but to be sarcastic I said, “You must have the wrong person I don’t go to the grocery store, if I need anything my dad goes for me!”

He proceeds to take me to the middle of the small dance floor and begins to start taking off his clothes. Meanwhile I am red in the face not even wanting to look knowing my parents are watching, and a little girl who is setting Indian style on the edge of the dance floor as though she is getting ready to watch a puppet show. He brought a little boombox and played a really cheesy song called Cotton eye Joe. He was a white boy so he was genetically lacked in the moves, but I give him an E for Effort! The friend who got the stripper for me (god love her) did not really know me very well because if she did she would have gotten me a fireman instead of boot scootin Cotton eyed Joe! Normally, all left the women would get in a circle around the stripper while hollering and tipping him. None of this happened for everyone was anxious to see the expression on my face. About that time an old man opened the door to come in. He was totally shocked to see Cowboy Billy Bob (that was really stripper name) shaking his moneymaker! The old man lost his dentures!! I have proof, it is on a VHS tape somewhere. At this point all eyes were on the old man. I was rolling!! That was the best icebreaker ever. After that I just let loose and tried to have fun. One of the best things that Cowboy Billy Bob did was not strip down to the banana hammock (G-string)!! There is nothing attractive about that at all, am I right ladies or am I right? As the song wound down he sang happy birthday to me and left getting no tips. The party did not end there, as I got presents. I got a half-dozen white chocolate twig and berries,ECKK!!!!!! People started pinning dollar bills on my blouse! I think I ended up with $25 (I made more than Cowboy Billy Bob, LOL)! When the karaoke began the guy who ran it was a very good singer and he sang the country song (of course) “Keeper of the Stars”! It was very sweet. We closed down HOOTS, but do not worry I could still drive my wheelchair in a straight line!

It was a 21st birthday I will not forget! HOOTS has moved to a bigger location now. I have been a few times but not in about 10 years.

So tell me about what went on at your 21st birthday? If you dare to tell, I did! Or any other memorable birthday?

Thanks for taking the time to read, MISS S

March 19, 1995 I GOT DUMPED!!

2008-09-11T19:57:00.000-07:00

Those of you who know me or have read my blog in the past know that I love Firemen! Through MDA I have had the privilege of getting to know lots of firefighters. And have gotten to know some of them on a personal level. This particular March the Firefighterrs were having a fundraiser, and invited me and my parents along. It was a concert at the Dallas Convention Center. The Charlie Daniels Band and the openers 4 Runner were performing. I knew who the Charlie Daniels Band was as they sang the popular “Devil went down to Georgia.” Could Charlie sure play that their fiddle! However I did not know who 4 Runner was. This was not the first concert I had been to that was being held for the firefighters. I got to hear Kenny Chesney when he was merely an opening act! Being in Texas you hear a lot of country floating around so much that all the twangs sound the same! I was excited to go. When we pulled into the parking garage my dad got me out of the Maroon Chevy Equinox SUV and into my wheelchair. I was very stubborn (nothing unusual) and refused to wear my seat belt while in my wheelchair. It was a big deal at summer camp that you wear it, and I would try my best to keep from doing it. By wearing the seat belt it made me look and feel more disabled. Like a little kid being strapped into their car seat not wanting to be confined. This was my thought. My parents never pushed the issue. So anyways, so I was rolling along when my dad and I both noticed the sign to get on to the elevators. But what we didn’t notice was that we were about to go off of a curb. SPLAT went my head onto the concrete! My dad said it hit so hard you could hear it echo in the parking garage. It hurt like a MO FO!! My dad quickly picked me up and back into my wheelchair. I had the death scream, blood was everywhere, Dad was in tears on his knees saying how sorry he was. Mom being the calm one tried to simmer us both down. She told us to both shut up, and for me to hold up my head so she could see where the blood was coming from. At this time over walks the security guard. He was strutting around like Barney Fife snorting his nose, sticking out his stomach like a fightin chicken, and pulling up his polyester tan trousers while not being in any hurry! He said, “Now, what seems to be the problem here?” Mom asked him if he could go get some paper towels. Not being in a big rush he brought some back. Mom was able to see that I had a big gash above my right eyebrow. My all over the face red Sally Jessie Raphael frame nose piece had gashed it. So the security guard took us to where the EMT was. They were able to bandage it up and said that I had seven hours to get stitches that the gash was really deep. 7 hours…I thought for a second and realized that was plenty of time to still go see the concert! Everyone thought I was crazy. They gave me some Tylenol, and I was boot scootin (I mean boot rollin) my way to the concert! The Tylenol did not do JACK, as I had a pounding headache the whole opening act. Everyone kept asking me how I was doing. I would just smile, and say OK! I knew a lot of the firefighters who happened to be there. One of the main firemen who organized the concert felt sorry for me and took me backstage. I met all 4 of the 4 Runners! They were really good and there was one song that I did recognize from the radio and it was called “Cain & Able.” They were really nice. I know I looked like a big dork with my bandaged up forehead. At least I was close enough to see them perform because I had no glasses. I also met the manager from Arista records. He scheduled the concert’s in the DFW area. His name was Frank and he gave me his business card. With his raspy voice he told me to give him a call that he would hook me up with some free CDs and concert tickets! I was all about that! After meeting the guy’s and shootin the breeze I went back out to the concert just in time to hear that big fiddlin song “Devil went down to Georgia!”…..

Several hours later I was lying on a table in the emergency you room. I was not used to laying flat on my back so it bothered me. Which made my feet act up. My dad was trying his best to get them to relax by massaging them…GOD LOVE HIM! He felt so guilty that he promised to buy me some new glasses! If that’s all I had to do to get new glasses paid for, LOL! I was never so happy to retire those all over the face red Sally Jessie Raphael frames (for a pic of them checkem out in my previous post)! I did not feel a lot of pain and got seven stitches! You can hardly even tell that I ever had stitches above my right eyebrow. That doctor was good!

Below is a picture of my dad (far left), Frank (Dolphins T-shirt), and the 4 runners when I went to see them backstage at Billy Bob’s in Fort Worth several months after getting dumped. I am also sportin my new glasses! A lot better, huh?

A couple of months later at my 21st birthday party some friends of my dad’s friends had gotten me a first aid kit as a present! They told me I was to keep it handy when my dad was pushing me, LOL!

Frank and I had become friends and he sent me some free CDs along with tickets to see 4 Runner and go backstage at Billy Bob’s. While there he just pulls out two tickets to go see Bon Jovi! I love them. After I saw them we went our separate ways about 10 years ago I tried to write and call him, but I was told he was no longer working for Arista records. He was a very nice guy and I hope he is doing well. As for 4 Runner, I don’t think they made it very far on to the country scene.

Of course it is something that we can all look back on and laugh? I have not spent a day without my seatbelt since. Got a crazy story that you can look back on and laugh? I would love to hear it.

Thank you for taking the time to read, Miss S

3/9-3/12/95 ATAXIA, U CAN FIND IT ON THIS PLANET!!

2008-08-23T15:05:00.000-07:00

Ever since we moved to Ft. Worth I had been spending the majority of my free time with the Maynes (check out my post about meeting the Maynes [March 2008] to find out about them, and see a picture). They were my second family for sure. Cindy (the mom) was very knowledgeable, and was always looking for a glimmer of hope (research update’s, talking with others, or surfing the net) on FA. They were going to go to the National Ataxia Convention in Huntsville Alabama and invited me to come along. I was very excited to go! My parents had never really had a huge interest about FA. They know what they need to know!

We were going to drive there. They had a van. Not a new van, or an accessible van with a lift. Just a van that was probably purchased down by the river, LOL! They did have a VCR hooked up in the back so as we were riding we could watch some flics. So we loaded up the van with our luggage and necessities. Let’s not forget there are three FAers in the van. I used a wheelchair, Sarah used a walker, and Adam just used what ever was around to hold him up. I cannot remember how young Adam was at the time (maybe 10) but he reminded me of me walking around in my drunk days! It was around 9pm Thursday night when we left their driveway. We were set to arrive sometime Friday morning. The back seat’s were folded down like a big bed. Sarah and I laid back their and watched a movie. Adam was busy playing his Game Boy and listening to Green Day on his Walkman! Ray was driving and Cindy was reading the map. We began hearing these spluttering noises coming from the van about 2am.. We are in Bossier City Louisiana at this time. Ray pulls over to find that something was terribly wrong. We did not have cell phones at that time but they came prepared with CB’s. So Ray was able to get a hold of the police, and they informed him that there was no place open at that time of night to fix the van. So we would have to stay at a hotel until then. The earliest mechanic place opened at 8:00am. Everybody was tired and could not believe what was happening! We knew we had to stay somewhere for the time being so we were all escorted and our equipment (wc and walker) to Bates Motel (referring to the 1960 Hitchcock thriller “psycho”). The hotel door creaked open as we entered. We were so tired that we did not care what the rooms looked like we just saw the beds. There were two full-sized beds. Sarah and I shared one of them. As we climbed in it was no Sleep Number mattress, let me tell you! We were cold so we pulled up the blanket, but it was so paper thin we just left it at the foot of the bed. It was like someone had taken some paper towels and sewn them together! You can forget seeing chocolates on the pillow, there wasn’t even a Holy Bible on the nightstand! I happened to catch Sara trying to catch a few ZZZ’s in the photo below. As you can see there were brick walls. So you could try to huff and puff but you could not tear that hotel down! I think I may have slept 3 hours, and that was 3 hours too long as when I woke up I had a crick in my neck. Of course no one was even tempted to use the shower! It took about an hour and a half (and some major dough) to fix the van. So we got on the road again at about 9:30am. We could not get there quick enough. We finally arrived in the evening on Friday.

Due to the fact that Sarah was 4 1/2 years younger than me, and my best friend I decided to go with her to all of the event’s they were having for teenagers. It actually worked out well for I knew I would get the elementary school down low from Cindy about the meetings. I am not sure how many people were in attendance but I had never met so many people with Ataxia before (As of now, there are about 35 different forms of Ataxia and FA being the most common). I felt like one of the majority and I could relate with so many of them! It was awesome. I could not introduce myself quick enough for I was wanting to meet everyone. The hotel that we stayed in was next door to a Space Center where they had space camps. Everyone got to tour the Space Center on Friday night. It was really neat to get to see what all it takes to go into space. After the tour we had a meet and greet time.
Saturday was very laid-back for us and the adults were in little seminars throughout the day we had a lot of time to just hang out and visit. We went back to the Space center for some fun time in the afternoon! In this pic I used a contraption where you could tell what it was like to be in no gravity. I was one of the only Ataxin’s who was already in a wheelchair full-time. The majority of the teenagers (like I was) could still walk but of course needed help. So there was some of the simulators that I was unable to do, but that’s okay. That meant I got extra time to talk with the guide’s about stuff. One of the guides and I talked alot. He was really cute, but of course getting married the next weekend. That was just my luck!! He was going to Hawaii on his honeymoon and I jokingly told him to bring me back a postcard. He took down my addy, and all be J Lo and behlold if I didn't get one in the mail! I was shocked!! And never heard from him again.

Saturday night we had a party. In this pic we have Sarah and Jesse with myself trying to sneek in with my all over the face red Sally Jessie Raphael frames at the party! Sarah and I hung out a lot that weekend with Jesse. He had FA but, we also thought he was Keanu Reeve’s in the movie “Speed” cute!
This pic was taken on the day we parted ways. This was another one of our friends who had FA, Bridget, along with Sarah and I. I did not take tons of pics and it was just a throwaway camera! The few I chose were the best ones, and something freaky is going on with everyone’s eyes. So blame the camera and not the picture taker (except for the one with my eyes shut)!

That is a weekend I will never forget it. We made it home safely. The title of the post comes from a T-shirt I bought at the conference for my dad that has that saying on it. He still wears it!

I unfortunately have not been back to another ataxia conference. They have them every year and I am planning to go to the one in Seattle, Washington in March 2009.

Thanks for taking the time to read, Miss S

9/94-2/95 "THE ISSUE" BEGINS

2008-07-05T20:41:00.000-07:00

Not too long after we got to Ft. Worth I started looking for a job. I got in contact with the rehab here and got a counselor. She sent me to several different types of training classes. Most of them made me out to be some kind of mental case. For example, at one place I went to was doing things like separating colors of m&m's or licking envelopes. Very humiliating. There was another place where I took all kinds of tests to show what I wanted to do and what I was good at. Then I made a résumé. Hello, this was stuff I totally did when I got my certificate in business technology. During this time because I was spending the majority of my time in the wheelchair standing for long periods of time was not happening. My leg muscles were getting weaker:( Because my bathroom (aka “The issue”) at home was set up for me I was able (and still I am) to get my pants up and down, and transfer on and off the potty by myself. But public or other people's restrooms I need assistance. It was very embarrissing to be a 20 year old and need help like that. I had mentioned the fact that I would be needing assistance in “the issue” to the trainer, and was asking how I should handle it w/ Employers. He was pretty much like, "You will never get a job because you need help in the restroom." Now this man's job was to help people get job's. I was devastated by that comment, and went home and cried and cried. I do not handle confrontation very well. So I did not debate with him, and thought what if he is right, maybe I should just give up. It did not stop me though for I was determined to prove him wrong!

A few weeks after that my counselor told me that the FAA (Federal Aviation Administration) had a nonpaying three-month internship for people with disabilities. After the three months they would have a meeting to determine if the job was suitable for the person w/ the disability. They would at that time put you on the payroll. What an awesome opportunity, and I was excited to get started! I interviewed for the secretary in the human resource department position. In the interview was the human resource boss, a coworker (Yolanda), and the gentleman handling the hires for people with disabilities. All was fine. My duties would include data entry, mail outs, answering the phones, and directing people who would come in the office to where they needed to be. I asked to check out the bathroom (aka “the issue”), and told them that I would be needing some special bars in order to go independently in “the issue”. Of course, they would not agree to put in the special bars until after I was considered and on the payroll. However, Yolanda and the boss said there would be no problem for them to help me in “the issue”. I could breathe at that point thinking everything would be okay with the "the issue". The FAA was about 15 or so minutes away from my house. So my parents helped me to map out a back road route to go. My mom was not working at the time so she would follow me to work, while my dad followed me home the first couple of times just to make sure that everything was OK. I was working Monday through Thursday from nine to four.

MY FIRST DAY
I was nervous about my first day, and hoping I would get along with everyone. I wanted to look my best so I put on a dress and dress shoes. That morning everything went well. The too good for everybody boss (I do not even remember her name, which is no sweat off my back!) Showed me what I would be doing. She did seminars on how to treat people in the workplace. She would have me type up different articles from books that would be helpful. Stuff written by others to sound as she was the clever one. The HR Dept. was the first area you would come to as you would walk to the other offices so I would direct others on where to go. There were a lot more Dept. in the section I was in. Yolanda was not there on the first day. So it was time for lunch. They had a nice cafeteria in the building. I went to lunch by myself and was nervous about carrying any food that could spill on a tray in my lap while trying to push myself. I was too stubborn to ask for help. They had some nice meals with pretty prices! So I just got something small. I ate at a table by myself. After that I knew that would be a good time to go to "the issue". I knew that my too good for everybody boss was still in her office, but I could not bring myself to ask her. I was so embarrassed to ask, so I tried to do it my stubborn self. I could hear the drama/horror movie music going on in my head as I entered through the door! At least I was able to get my whole wheelchair in the stall and close the door. A lot of public restrooms have bars and stuff to make it handicapped accessible but nothing is wide enough for a wheelchair to get in. As long as some businesses meet ADA (America Disability Act) requirements with the bare minimum that’s all they care about, it is irritating! I am off my soapbox for now, and getting back to this story (thanks for listening to me vent). So I am staring at “the issue" knowing I am wearing a dress with dress shoes. Which is a scary thought! I got up okay using both hands to pull-up on the bar. Now I had to try to get my dress up so that it did not dip in the toilet. My dress shoes started to slide on the tile floor, and I flopped down on the toilet which made my dress dip anyway! It was awkward, but I got my business taking care of (for those of you who are concerned, no I did not pee on my dress!) I got back in my chair sitting on my wet dress. I was almost in tears, but told myself that it could've been worse because I could have fallen. So I left "the issue" behind me and headed for my too good for everyone boss to tell her I was back from lunch, and that I have gone to “the issue”. I rolled into her office with all smiles and saying that I was back. I told her I also went to “the issue” by myself, and she looked shocked. She asked me if I did okay, and I told her that I hated it and would not be trying it again by myself. She proceeds to tell me that when I get into the real world people will not be willing to help me in the restroom. WTH, this is the second smartass who has told me this!! Have I been living in a fake world?? Again, I do not handle confrontations very well. I did tell her that if someone does not want to help me in the restroom, that I do not want their help. I told her that I would not be asking for her help ever. I went back to my desk, and cried.

The next day Yolanda came to work. I told her about what went on the day before. She gave me a big hug, and told me not to worry. God love her!!! She helped me from that day forward with “the issues". After a while other women started getting to know me and me know them so they started helping with “the issue" but Yolanda was the main helper. I even made lots of friends who I would have lunch with.

Three months had went by, and I was anxiously awaiting to hear whether or not I was going to be put to on the payroll. Even though the too good for everything boss and I did not get along with one another I enjoyed working there, and knew I would be set if I had a government position. I could get off SSI (Social Security Income, get my own place, I could go on forever. The too good for everything boss was the only person I did not get along with. But she was not in the office all the time because she would be at seminars and such. So I went to the guy who helps people with disabilities get a job with the FAA to find out my fate. He proceeded to tell me that there was a hiring freeze and to hang on for a little while longer. That it looked promising for me. So I began to wait… Four months, five months, and six months. I went to him each month only to hear the same answer about a hiring freeze. I had asked him if I could get reimbursed for gas or if I could get my lunches paid for. He just shook his head and told me he was sorry. That is all he could do. I put up with it until the six-month mark. I could not afford to keep working for FREE. And I definitely was not going to keep working under the too good for everything boss for FREE! So I gave them a notice after six months of FREE labor. They had a little going away party for me with cake, and a certificate showing that I worked for the FAA (for FREE). I am sure and that was all Yolanda’s idea! After I left I never heard a word from FAA again. My chances were promising, my a**!

After that, I saw Yolanda a few times. She had a baby shower that I went to. In Oct. '95 when she had the baby girl, Tanisha, we went to Cracker Barrel for lunch to meet her. I was amazed by all of her hair! Our connection at that time was lost. I would love to see her again!

Due to the big deal that was made out of “the issue” it is still a big issue in my life. I stay close to home, watch my liquid intake, and sometimes hold it. I plan my day around “the issue”. I am very blessed to say that I have never had a bladder infection (knock on wood and thank you Lord!). Throughout my dash I will be talking about diff. probs I have concerning "the issue". Is there something in your life that has become “your issue”? If so, don’t hesitate sharing.

Thanks for taking the time to read, Miss S

EARLY SUMMER '94- THE PUPS

2008-06-30T19:57:00.000-07:00

We lived about five minutes away from some of our cousins. They had a couple of boxer dogs. One being a female and was about to give birth to some puppies. As she delivered the veterinarian found cancer and they had to put her down. I did not know it until then but cancer is pretty common in boxers. It was a very sad time, but now the focus was on taking care of the puppies. There were six of them. They were newborn and needed to be bottle fed, comforted, and played with. My cousin, Melissa, who owned the puppies had a full-time job during the day as did her husband. My mom was not working at the time so Melissa asked her if she could babysit the puppies during the day while she worked. Without hesitation my mom said yes! I was not working at the time either so I was very excited as well!

Every morning for about six weeks Melissa would bring the puppies in a box. You could hear the little noises they would make all along what their paws scraping to get out of the box. Mom and I would each bottle feed 3 puppies a piece. They would use our fingers as pacifiers. They would grab a hold and not let go! During this time my Grangee (Dad’s Mom) came to visit from Oklahoma, and she also got to participate in feeding and playing with them. She was so cute with them, that as she got through feeding one of them she would put him onto his back and rub his tummy. And said that is how you would get him to burp! Now I am not a professional bottle feeder to dog’s and I am not aware if Grangee had any special training either, but it sounded good! Besides that she is a Mom, and you don’t question your Mom, right? A few weeks after total bottle feeding them we started giving them cereal. It looked like oatmeal. So Mom the lined them upon the linoleum floor in the kitchen with six plastic saucer bowls filled with the oatmeal, and let them have at it!! Their eyes were barely open and they were stepping all in the cereal:( Due to this they were not getting good traction on their little paws so they were slipping everywhere. They had more food up their nose than in their mouth! I was beginning to think they had FA!! It was the cutest mess I had ever seen! This was the only time I had ever seen my mom NOT frustrated in cleaning up someone else’s mess! She was in her total element:) It was a very fast six weeks and we had so much fun! They all survived!!

If I remember correctly Melissa ended up keeping two of the puppies and sold the rest. This was one of those things in my dash that might not seem like much. Thank you Melissa!! Have you ever done something that seemed so small but meant so much to you? I would love for you to share.

Thank you for taking the time to read, Miss S

COMING SOON........

2008-06-19T20:23:00.000-07:00

I so do apologize for the very long delay. I have had a lot going on lately. There just doesn't seem to be enough time in the day. I am currently writing the new post and it should be on here soon. Thank you to my regular readers to check in on me. Writing is very therapeutic for me. The longer I stall the more that will be at in my dash? LOL!!!

Thank you for the Patience, Miss S

FEB 94: MEETING FRANK

2008-04-10T15:14:00.000-07:00

Before the Maynes and I arrived at the Stockshow Cindy told me about a gentleman named Frank with FA whom I would be meeting there! She said he was one of the most determined and amazing people she had ever met! (I agree) Frank did not appear to be someone interested in going to a Stockshow. He was an Italian guy, originally from New York, with a heavy accent, and tattoos. He was wearing a tank top with a pair of loudly colored MC Hammer pants (I have heard them called weight lifting pants before). Hey, give the man a break for it was the early 90’s, and I hear they are very comfortable! (A couple of years to go Sara, Frank, and I were talking and we were laughing at him always wearing those types of pants back in the day! He just shook his head and said “What was I thinking?" LOL) Frank was already in a wheelchair, and in his early 30’s. Frank had a late onset of FA. So he did not begin to see signs until he was about 19, and he officially was not diagnosed until his mid-20s. FA does not discriminate on age, or race.

Here is a picture of Frank and I. I am not exactly sure when this photo was taken, but long ago.

Frank quickly became my mentor. I would look to him for advice as he could understand me better than anyone else. He had a good sense of humor and a very quick witt! He was (and still is) an amazing individual with a good head on his uncoordinated shoulders! He was living on his own in a beautiful home, with a wonderful job, and driving himself everywhere. He was very big into exercising and staying fit (did you see the dudes arms in that picture, hello!). He was the President for Disability Sports of North Texas. Was riding a hand bike (New York marathon 2x and tons of others), playing Bocce Ball and playing tennis. He probably did more than just those because you name it and he did it. He also participated in the Paralympics. He was doing all of these things from a wheelchair not to mention while having FA! FA is not in a easy disability to categorize because it is hard to figure out areas that would make it fair for us as far as the Paralympics go. Traveling while having FA is no easy task but Frank did not let that get in his way for he traveled not only with work, fun, but also for the Paralympics team. What an inspiration he was to me!

Besides going to the Stockshow together we did a lot of things together. I will mention a couple of them for they are funny.

Sometime in March 1994 Frank called me to ask me if I would like to see the site's along with his brother and best friend from New York as they were in town. He said that his brother and best friend would be there to help push us in our chairs and stuff. They were going to Dallas and I had not been yet. I thought the world of Frank so I knew I would get along well with his brother and best friend. His brother Mike was a New York cop and so was his best friend Louie (who was also a volunteer fireman, woo hoo!) So when they came to pick me up I was of course a little intimidated to be around all these NY Cops. Louie drove Frank’s van while Frank sat in the passenger's seat while Mike and I sat in the back. It did not take long for me to warm up to these guys. They were cracking me up they were so funny. So we went to the Dallas West End and walk/rolled around there with all the shops and different places. We were all getting hungry at that point, so the guys decided they wanted to go to Hooters. I was outnumbered and not going to argue so I just had to grin and bear it!! I had the best hot ham and cheese sandwich I had ever eaten so I was not complaining. Since we left in the early afternoon I knew that I'd better go to the bathroom while I'm there. So I asked the waitress if she could show me where the restroom was. We went in the restroom, and I got a little nervous. There was nobody else in the restroom!! So ladies if you are ever out and about and need to go to the restroom really bad and want to go somewhere where you know there's no lines…Hooters is the place to go! The waitress was so nice, for at that time I did not need any assistance in the restroom but she said she would wait with me just in case I needed anything. That meant more to me than my awesome hot him and cheese sandwich! When I came back to the table Louie had spilled his drink and Frank and I just laughed and laughed saying how we should be the ones to spill the drink! From there we went to see the Dallas Stars hockey game. It was great! I only watch hockey when it is life for I love the excitement of the crowd. I spent the whole day with these guys and did not stop laughing.

It has been quite a while since I have seen Mike or Louie in anything other than pictures. The both of them were not harmed during 9/11, which is a big blessing! They both have family’s now and are doing great!

The other story I wanted to share with you happened in September of 1994. Frank and I were chatting on the phone when he mentioned that he had been trying all day to get Metallica tickets. I told him that I liked that group and they were the only heavy metal group I did like. He had a hard time believing that of me to even like any heavy metal group. So he called me back a little later to invite me a long to the concert with him and one of his friends. He probably thought I would gracefully bow down from taking the ticket, but I accepted! I was all excited. I did my best on trying to look older. When David and Frank arrived I got in the van, and off we went. The concert was at the Starplex in Dallas and the closer we got the more congested the traffic became. Even though we parked in a handicapped accessible parking place there was still aways to roll to get inside the stadium. David was trying to push Frank and I so that we you would be quicker! Poor guy, I am sure he worked up a sweat! As we reached the gate Frank told me he to open at my purse for the security. I was all taken back by that for that had never happened to me before. I felt a little violated, but did not blame them because of where we were. As we got to the stadium I felt like all of us crips had some of the best seating! We were sitting right behind the reserve seating. There was a ramp to get up to it, so we were taller than everybody else. It was awesome! But the only problem was that people would try to climb up on our turf to get to the reserve seating. There were security guards all up in our business trying to stop the squatters! ARGH! I know I got some second hand Mary Jane smoke if know what I'm saying!! There were several opening groups but we missed half of them and the other half I do not recall. When Metallica got on the stage it was like the whole floor was vibrating. There was no way I could talk to anybody not even between sets because my ears were ringing. I loved it. We left a couple of songs before they did their encore so we could try to get the heck outta Dodge before everyone else did. As we were leaving the parking lot we had our windows rolled down, and we could hear them playing "Enter Sandman". It was a experience and a half. And I was glad I got to experience it with Frank. Not only is he a funny guy but any time you get two people with FA together there will always be something to funny to talk about!

Around that time we also went see the movie "Forrest Gump" in the theater with our friend Marjorie. It is one of my favorite movies! And that's all I have to say about that:)

I still see Frank time to time. A year ago he got married to a wonderful and sweet woman named Jacqueline. I had the privilege of meeting her this weekend in their beautiful new home. The picture below was taken of us then. Look how much shorter I am compared to Frank! I know it is his power wheelchair for it is taller, but it makes me laugh.

He still has the same wonderful job that he did when I met him! I am very proud of Frank for several years ago he got his master's degree online. He is a very hard worker. Frank has had some health issues, but that has not slowed him down. He is no longer driving. Several years ago he was diagnosed with having diabetes. Diabetes is a common symptom for people with FA. It is under control, although he has to give himself shots of insulin twice a day and watch what he eats. He had a couple of other health issues. But it is all OK now. He is working all the time and has started back to riding his bike. He uses a Hoyer lift for most of his transfers now. Doing the same things it is not easy as they were before. And as he says if you don't use it you will lose it. I myself have proof of that!

Frank is a very special person in my life. There will never be anyone else like him. I know he has been through some hard times personally, emotionally, and physically. When I saw him this past weekend he told me that he has never been happier! I could not be more thrilled for him as he deserves it! He is still an inspiration to me!

Do you have someone in your life that has been a mentor, or someone you have looked up to that you would like to share? I would love to hear.

Thanks for taking the time to read, Miss S

FEB. 94- MY FIRST OUTING, AND THE MAYNES!!! [edit]

2008-03-27T17:20:00.000-07:00

It was my first week of being in Ft. Worth as I began to wonder who I would meet, and what new places I would venture to find. When all of the sudden I received a phone call from a lady named Cindy who had two children with FA!! She also headed the support group for people with FA in the area. She had gotten my number from the MDA in Ft. Worth. She was very excited to meet me and to have me meet her daughter for she was about 4 1/2 years younger than me! Dealing with the rarity of FA it is hard to find someone around your age, and we lived really close to each other. She asked me if I would like to join them at the Fort Worth Stockshow that weekend. I was excited. My first weekend in Ft. Worth and I already had plans! Cindy told me that her daughter was having a hard time accepting FA. Like me, she was diagnosed around the same time I was and was not in a wheelchair at the time. Cindy's youngest son Adam also had FA. He was still physically active. When they came to pick me up they all came inside to meet my family. They were all so nice and I instantly fell in love with them. As we got to the Stock show we ended up meeting (Cindy called him to come) another gentleman with FA there! His name was Frank and I will share about him in the next post. Meeting three FA'ers in one night, I could hardly believe it!

Below is a pic of the Mayne fam and I. They also have an older daughter that is not pictured. She was not around alot. I did know her though. This pic was not taken the day of the Stockshow.

The Maynes had become my second family. My mom, dad, and I started attending the support group meetings, and then I gained even more friends w/ FA!! I was always spending time at their house. Sara and I began spending quit bit of time together. She reminded me a lot of myself and we could totally relate to one another. I would look at her and sometimes get sad because I knew the road ahead of her would be rough for my FA was more progressed. Although she was more of an introvert she had no problem with the boys!!! Cindy told me once that Sara said she felt like I was her sister. That brought tears to my eyes. Sara, Cindy, and I were always spending time together whether it would be shopping, going out to eat, or going to the movies. One day we surprised Sara at the movies by watching "With Honors" starring Brandon Fraiser. He could butter her popcorn anytime! It is a really good movie if you have not seen it I do recommend it! We shared so many laughs together. Sara was attending a Christian High School about five minutes away from my house. I had gone over there on several occasions to have lunch with her. I even sat in on a couple of her classes. She was so much smarter than I was for she was taking trigonometry which I never even took in College!! Not too long after she turned 16 she began driving. She also used hand controls like I did. One night we decided that we were bored and would take a trip to Blockbuster to rent a movie. Sarah drove her car and I sat in the passenger seat. She somehow managed to shove my wheelchair into the passenger side back seat, and then go around to the driver's side back seat to put her walker in there. Looking back on it all I just shake my head! When she graduated from high school she also walked across the stage to get her diploma! I cried, I was so happy. Soon after that she also became wheelchair-bound. Cindy passed away after a long battle with cancer in 1999:( That was very hard. Sara also graduated from college With Honors! She got married, which she tells me is still hard to believe that someone could love her because of her FA. (I definitely understand, as a single woman I struggle with that about any man all the time.) She always wanted two children and that is what she got. I was around when the first one was little. I do not know how she managed to care for him due to her FA while her husband worked, but she did it! There was nothing easy about it. I know she has a helper with the second one. They are both really cute kids. During one of our conversations Sarah and I said how cool it would be to be able to progress backwards with FA! There is still one more thing that I will share with you in a couple of posts that I did with them!

I am still close with Sara, although she now lives in Georgia with her husband and two children. Her children are showing no signs of FA at this point! The pic on the right was taken in Feb. of this year as they were on the train and headed to the circus:) This is one of my fave pics of them. Nathan is on the right and will be heading off to kindergarten in the Fall. I cannot believe it! He is so smart. Annie is 2, need I say more! She is a very content little girl. Sara’s brother Adam is attending college. Their dad is now remarried to a wonderful woman and doing well!

Thank you for taking the time to read, Miss S

OCT. 93-JAN. 94: HOME IS WHERE THE HEART IS

2008-03-01T11:49:00.000-08:00

Sorry for the delay, I have been under the weather for the past several weeks.

My family and I had known since the summer that there would be a big possibility that we would be moving to either Topeka Kansas or Ft. Worth Texas, because of my dad’s job transferring in the near future. We were all hoping for Ft. Worth Texas because of the weather, and the fact that we had cousins who lived in Ft. Worth that we would visit there every other year. So we were familiar with that area better. By the end of the summer we knew that Ft. Worth was going to be where we hung our hat! My dad started his job there in October while my Mom and I got things in order at our home in Tulsa. He stayed with our cousins during the week, and would make trips home on the weekends. Except for the times when Mom and him were house hunting. Some of my friends would tease me about going to Texas with the songs "She came from Ft. Worth" from Kathy Mattea (I was given this CD as a going away present) or "All my exes live in Texas" by George Strait.

Getting our house ready to sale was a chore and a half. My parents had lived there over 21 years so there was more then one junk drawer if you know what I'm saying! We had several paint parties. My Aunt made beautiful new curtains for our kitchen (w/a sewing machine), and a friend reposted a built in the kitchen area we had. Our house was looking nicer than it was before so I was saddened we were having to leave it! As Christmas time came we did not even bother getting out the tree or ornaments because we were packing them. I had to pack all of my belongings in to a suitcase, I was so sad. Where we lived at in Tulsa there was not a lot of opportunity there. You had to go across the river to get to a mall or anything. I was ready to see what was new, but at the same time this was all I ever knew.

My mom and dad went house hunting several times while they were there. They told us where they would to go in the houses, and see if the bathroom door could be enlarged. If not, they would look no further at that house. They finally came across a house where not only the bathroom door could be enlarged but that was able to easily get in the garage door. Of course we had to have the home close to my dad worked. We actually found a house close to just about everything. It was great. So, all in all I was excited for the fresh start to Ft. Worth. I was not going to be leaving anything bad behind just ready for the new possibilities.

As we were set to leave I just could not get in my last goodbye. It was very hard. My cousin, my brother, my grandmother, even my neighbors across the street. My Aunt had driven her truck with I in the passengers seat, my Uncle was driven the U-Haul truck., my Mom had driven her SUV, and my Dad had driven my car. It was so funny because my Aunt and I were behind the U-Haul truck that my Uncle was driven, and it hit the curb. My uncle was a professional truck driver. My Aunt and I had the biggest laugh about that. That started off the trip on a good note. It did not seem to take as long to get their. We got things unloaded in good time. One of our neighbors was from Muskogee. Small world and he helped us. Upon settling things in the first thing was getting the bathroom accessible for me. Our cousins who lived here had a neighbor who did construction work. So Paul came over to widen the bathroom door. Their daughter’s husband (still our cousin) knew of a person who could install & make bathroom bars in the shower and by the commode. Besides widening the bathroom door Paul also lowered the closet rail so that I could reach it. All of that was done in about two days. Things were beginning to look more homey than they had in the past couple of days.

I normally do not deal with change very well at all, and that was the thing that made me scared. Have you ever read the book, "Who Moved My Cheese?" By Spencer Johnson, M.D.? If not I highly recommend it as it shows an amazing way to deal with change in your life.

Thank you for taking the time to read, Miss S.

OCT 93 TO JAN 94- SAYING GOODBYES

2008-02-01T18:39:00.000-08:00

As I mentioned in the previous post that my Dads job was transferring to Ft. Worth Texas. Of course, the hardest part of it all would be leaving my family and friends in Oklahoma. So I made it my mission to spend time with them. I was seeing everybody I could possibly see. I was not sure when I would be able to make it up that way. My college and career class at church threw me a surprise goodbye party. That surprised me! Shon (a friend from summer camp) and I went to the hospital to see my good friend Mel on Christmas day (hey Mel, remember that?). Their were lots of others I saw as well. It would take forever to mention them all, and you would get very bored reading them. Though one of my goodbyes sticks out in my mind. I was not being a very good role model in this story, but it is in my dash! I live with no regrets, God forgives, and it is funny!! You will see why as you read below!

Throughout my teenage years my cousin Syl and I began to get close. She is six years older than I, and it just was not cool to hang out with the little one. Although she loved playing dress up with me as though I was her little doll. She would make me go downstairs, and show me off to the rest of the family at holidays! She still loved doing that. When we are together she is always doing my hair and makeup! Every time we are together something crazy happens! Check out my post in the February 2007 archives titled: Can you say embarrassing?

So the plan was to have a goodbye bash. One of our friends Lisa, and Syl decided to take me to their regular hangout at a heavy metal club called Windjammer (they shut down a couple of years after this) in Tulsa. It was 18 and over, so no problem right? We had this scheduled for a while. About a week before our venture the club decided to only cater to those 21 and over. What were we going to do? Lisa and Syl definitely passed, but my 19 year old butt would be left outside. After much deliberation we did what we knew how. First of all, Lisa (she knows everybody) knew the club owner, and asked him if it would be okay if she brought a friend who was in a wheelchair, but only had a birth certificate (BC) for ID. She also told him that I was moving away. So he not only said yes to me coming, but also said that he would buy my drinks all night! So we had that covered, now all we had to do is get a BC of someone who is at least 21! I do not know how, but Syl got her sister’s (thanks De!) BC from her Mom! The problem then was that De was 24. Even on my best day it was hard to look 16 let alone 24! Lisa and Syl came over to my house and gave me a head to toe makeover in an attempt to make me look legal!! (For those of you know me now it is hard to make me look legal at 33! I was still offered kiddy menus at 30!) Lisa and I were around the same size, and she brought me this black tight one-piece outfit that zipped up the middle to wear. Now I know what you are thinking, yes I could have very well been in the theatrical performance of Cats!! To spice things up a little I wore a pink flowered silky and black lacy bra. We unzipped the outfit just enough to show the bra and a little cleavage. We did not want to give everything away!! I wore black leather pumps that I had, as my shoe style did not matter because I would be sitting throughout the night and not walking. It is now time for my hair and makeup and Syl could do no wrong! With a little curl, tease, and lots of hairspray my hair was fabulous. Appearing older took a little more makeup than what I was used to wearing. My dad took one look at me, called me Jezebel, and politely asked me to take off the lipstick, LOL! I wish I had a picture to show everyone, but the mental one I'm sure is priceless!! They had come over to get me ready for the club early, but were going to pick me up at a indoor pro soccer game my parents and I were going to. It was closer to get to the club from there then coming to get me at my house. So I put on my leather jacket and zipped it up so that my cat suit would not be revealing. Thank goodness it was winter!! The game was awesome, and I was excited for Lisa and Syl to arrive. My dad's jaw dropped as Lisa and Syl came in to get me with their clubbing clothes on. To tell you a little bit about them they were both beautiful blondes who could definitely be models. Lisa had on a short white shirt where you saw her belly button ring, and a pair of stonewashed jeans that had slits in the back. Syl had on these jeans that were cut down the sides and had safety pins holding them together. She made them herself, and did not even use a sewing machine!! (Shout out to Jen on that comment, I had to!) We all looked ready to go! I memorized all of the important dates and stuff on the BC incase I was asked. As we got there I showed the bouncer the BC he did not question me, and just let me go on through. YES WE PULLED IT OFF! I met the owner and I do not think he cared less if I was a monkey for he was feeling pretty good if you know what im sayin’! So we all got some wine coolers (surprised to tell you that this was not the first time that alcohol had entered my body. How do you think I got the name drunk girl, J/K, LOL) and sat near the front so we could hear the band. We were afraid that they wouldn't sound loud enough! The name of the heavy medal band was UGLY!! And let me just tell you they could not have picked a better name! After banging our heads for a couple of songs we went over to this pool table, and began to play. We were beating people left and right. What was our strategy you wonder? Well Syl and I played partners. She played in pool tournaments and was on a team. So when I would screw up (which was often) she could clean up the mess! She made all the moves, and would angle my wheelchair where I needed to be. Holding on to the pool stick at the end to steady my shot she would tell me exactly where to hit the cue ball to put the ball in the pocket. It did not always work for me as I would usually either hit the cue ball too soft or too hard. But that is okay because Syl was that GOOD. So now guys are buying us drinks to try and prove that they are good sports and letting us win, and not just guys who got beat by the handicapped girl!! I would take a drink or two, and then pass it on to Syl or Lisa as they could hold their liquor better than I. Now if that was not enough excitement Lisa knew the band UGLY (I am telling you she knows everybody!) and told them it was my birthday. So they pulled me to the middle of the stage (and it was not a real big stage) and proceeded to sing and play happy birthday. The bass guitarist sat his guitar on my lap so I could feel the good vibrations, and sweet sensations, LOL! Shout out to Marky Mark and the Funky Bunch! He then presented me with a coupon for a free drink that I got from of his mouth, EWW I know! UGLY gave me a guitar pic (which I still have somewhere). Now people are buying me drinks because they think it is my birthday. I am not hurting for anything to drink let me tell you. If I had drank everything that was given to me that night I would have been living in the restroom! I knew that Syl and Lisa would take care of me. As the night ended at two in the morning we made our way to Denny's for breakfast and Pepsi’s. I had so much fun, and I know I would not have had such a good time if it wasn’t for Syl and Lisa. This was not the first or the last time that three of us were together. I could be exactly who I was around them, and I loved being around them for that. I may not get to visit with each of them as much as I would like now, but I am still in contact with them both. Love you guys!!

As I said before saying goodbye to my family and friends in Oklahoma was one of the hardest things about moving to Texas. 95% of my friends and family knew me before I became wheelchair-bound. So it was easier for them to see past the wheelchair to see who I really was. It was just a matter of getting past the FA for them. Now that I was leaving and going to be establishing new friends they not only had to see past the wheelchair, but also my FA. Acceptance was my fear. Right now I can honestly say that acceptance is no longer a fear of mine. Some will like me and some will not that’s just the way it goes. I don't lose any sleep over it!

Thank you for taking the time to read, Miss S

Next Post: THE BIG MOVE

Sept.to Oct. 1993- MY FIRST UNPAID INTERNSHIP

2008-01-27T19:25:00.000-08:00

There are things that you remember, things that you do not, and things that you wish you would not remember! This was one of those times that I know was there in my dash but do not remember anything specific about it. I thought I would at least mention it. I was proud of myself at the time for doing it. After getting my business technology certificate I had a one-month UNPAID internship. It was in Tulsa and was a big University that was branched out with four different Oklahoma colleges (OU, OSU, NEO, NSU). I do not know what it was actually called... It was 15 years ago so cut me some slack! I worked in the Northeastern State University office as a secretary. I would answer the phones, mail out degree plans, and talk to the people as they would come in to the office. It was nothing exciting and I did not make any lasting friendships from being there. It was merely something that looked good on my résumé.

Soon after I graduated my dad moved to Ft. Worth Texas his job got transferred. I was not going to even try to get a job in Tulsa after the internship was up for I knew my Mom and I would be joining him soon. I will talk all about that transition period in the next several posts.

Thank you for taking the time to read, Miss S

Sept.1993-Precious Moments Chapel

2008-01-15T12:28:00.000-08:00

I had become very close with some of my classmates at Tulsa Tech. There were several ladies that I was in class with who were older and had grown kids already. I was friends with all of them and enjoyed there wisdom! One of the ladies named Edith was one of my favorite friends from there. A couple of years before I started going there I began collecting Precious Moments figurines…

For those of you who are not familiar with what they are, here is a picture of the very first PM figurine I received in October 1991 when I got homecoming queen. It was given to me from a former homecoming queen named Courtney. The figurine was titled, "Congratulations Princess!" I liked them even before that, but did not have one. But one was all it took for me to start getting bunches. I was not only getting figurines but anything and everything that had to do with PM’s. I was even in the collectors club. For Christmas my parents decided to give me a really pretty curio cabinet to display all of my PM's. It did not take long to fill that sucker up. We ended up having to move the cabinet into the spare bedroom for I was not able to keep it with all my junk in my room. I still love the figurines, but have not gotten one in quite a while. I stopped being in the collectors club about five years ago. My friend Jen is always giving me a PM ornament every year for Christmas. I thank her so much for keeping the PM collection alive for me. PM figurines are created by the artist Samuel J. Butcher. In 1978 Sam began making and selling the figurines to convey the message of God's love to everyone…

Back to the story... Edith and I both had a love and collection for PMs. In 1989 Sam made another dream of his come true by building the Precious Moments Chapel in Carthage Missouri. I had told Edith how I would really love to go there sometime. Edith had been there a couple of times. She told me that she wanted to take me there as a graduation gift! She wanted to go back anyway, and wanted to share the experience of going there with me. That was very thoughtful of her. I was so excited. So we picked a Saturday to drive, and got there okay in her little two-seater truck. (I have no pics:( ) We started off at a welcome building where we signed up for the tour of the chapel (from stained-glass windows to painted ceilings the detail was amazing!), and museum (showing us step-by-step how the figurines are made). They even had a garden area with big statues of PM's. It was breathtaking and undescribable to see it all. They have added so many different things since I have been there last. I would love to go there again, and if you haven't been there it is something to see. I highly recommend it! Just thinking about it gives me goosebumps! It is very wheelchair accessible! They also have a wedding chapel, and I have always said I would love to get married there. So if you are out there man of my dreams, LOL!

For more info about PMs u can go to http://www.preciousmoments.com/ Do you have a collection that you would like to share? Thank you for taking the time to read, MISS S

Jan.-Sep. 1993: Tulsa Tech. Center

2008-01-05T19:14:00.000-08:00

I did not have a big desire to go on to college after high school. I knew it was really hard to get a good job just on a high school diploma. I was not pressured to go to college or anything. My parents made it clear that they would be proud of me no matter what I decide to do. So I signed up for a nine-month Business Technology training course at Tulsa Technology Center. I would start the day with my mom dropping me off in the mornings on her way to work. It was quite a ways from where we lived. I would usually eat breakfast there. That would consist of an Otis Spunkmeyer Banana Nut Muffin and, some Chocolate Milk! My mouth is watering just thinking about it, man how I love those muffins!! In our classes we would mostly do computer work, but would make time to study math and English. At that time computers were becoming the big thing. We learned WordPerfect as that was the new software being introduced. I picked it up very quickly, and absolutely loved it! Working from the computer always made me feel independent (still does) even though I was never a fast typer. Most of my other classmates were women (about 12), but there were some men (about 3) as well. One of the ladies who graduated with my brother at Webster was also in my class, so that was great. It felt good to know someone. I really did enjoy being there. I was even the historian for the Phi Beta Lamda, a little group they had. No, not Lamda Lamda Lamda you Revenge of the Nerd watchers!!! It was all day. And then my Dad would pick me up.

This was the first time I had gone where my wheelchair was a permanent fixture. So that made me extra nervous being around new people and being around new surroundings. I was not treated any differently from day one. I thought that men definitely would not be interested in me anymore (not like they were knocking down my door before!) because I was in a wheelchair. On Valentine's Day that year our little Phi Beta Lamda group sold carnations or a box of candy hearts with a message to send to someone. This guy that was taking heating and air classes gave me a pink carnation!! He came up to me that day to give me the flower, and to tell me that he thought I was very pretty. He sweeped me off my wheels!! I was speechless. We were friends, but nothing became of it. Another thing that happened regarding the fact that I was in a wheelchair was during a field trip that we took to Oklahoma City. I cannot remember the name of the place but it was something to do with learning about business and money. We took the big ‘ol yellow school bus. I assume I was carried on to the bus by a nice gentleman/friend. When we arrived in the city this one guy just jumps up and grabs me like a sack of potatoes and puts me in my wheelchair. I am shocked as he is merely an acquaintance to me and doesn't even know me or me him. It doesn't stop there though... This guy starts pushing my wheelchair really fast and popping wheelies. I was so mad and started screaming. I told the teachers he is not to come near me again. He stayed away for the next day at school him and I met with one of the principals. He never once apologized for getting all up in my (wheelchair) frame. I told him that I did not know him, and it was not appropriate to touch me even if it is only a wheelchair. The wheelchair is an extension of my frame, and that he wouldn't go and physically push some able-bodied girl's frame, and I am no different. Because of the fact that we did not know each other how would he know that he was not hurting me? Since he insisted he did no wrong and would not apologize I told him not to even look my way anymore. So he was instructed to stay away from me for the rest of the school year. He knew he better recognize from that point on and he did.

After 9 months I had the baby, LOL!! I crack myself up:0) But for reals tho I did graduate and get a certificate. That is about all I got! The computer skills have always been handy.

Thank you for taking the time to read, Miss S

MERRY CHRISTMAS AND HAPPY NEW YEAR!!!!!!!

2007-12-20T16:43:00.000-08:00

I APPOLOGIZE FOR MY LACK OF POSTING:( I WISH MY EXCUSE WAS OVERLY EXTRAVAGENT, BUT IT IS NOTHING MORE THAN BEING LAZY!!!!!! AS MY LIST OF NEW YEAR'S RESOLUTIONS BROADEN OF COURSE POSTING MORE OFTEN IS AT THE TOP. I WISH EACH AN EVERONE OF YOU A MERRY CHRISTMAS AND HAPPY NEW YEAR.

BY THE BY, THE PICS WERE A LAST MINUTE EDITION. CAN'T U TELL? THAT IS MY DADS CHARLIE BROWN TREE, AND HE IS ALL PROUD OF IT!!!!!!!!

MISS S

MISS S

NOV '92- JAN '93 THE BABYSITTERS CLUB (my version anyway)

2007-11-08T15:05:00.000-08:00

My good friend Mark from next door and his family had moved away when I was 15. Since then several different renters had stayed in the house. I was not close with any of them…until this one couple moved in early ‘92. They had a baby boy in June 92. She also had two other kids. A 3 yr. old girl, and a girl in middle school. The Mom worked at night part-time while the Dad worked during the day. I had instantly become friends with the girl in middle school. Although I was older, and out of school she kind of looked up to me, and felt comfortable talking to me about anything. That made me feel really good. I began coming around their house, and began a friendship as well with the mother. After having her son (Alex) in June I began to come around the house more often just to see the baby. He was the cutest and most content baby I had ever been around. His mom used to tell me that he really likes because he acted so happy. She asked me if I would be willing to watch him while she ran errands during the day. She was aware of the FA, but Alex was not a squirmy crawly baby. She did not plan to leave him for hours with me or anything. So I agreed. My first babysitting gig! I had been around babies before, but never alone with one. So she would bring Alex over may be once a week while she would go to the store, to the bank, or wherever. My parents both worked during the day so it was just me and thumper. She would come over bringing Alex and his diaper bag. She would take him out of his carrier, and put him on my bed. Then go run her errands, and come right back. He was the best baby. He had the cutest dimples ever. I wish I knew what was going through his mind at the time. He would smile and jabber constantly. I would wonder if he just had gas! There were only a few times that I did pick him up. Now I know what you're thinking... "It she a crazy drunk girl?" I would make sure I was sitting on the bed with my back leaning against the wall. I just had to give him little kisses on his forehead, and lots of hugs! He was so sweet. Did I mention the fact that he was the most content baby I have ever seen.! He never cried, and would sometimes be asleep when she brought him. I think there was only once that he was left Alex in my care for like 3 1/2 hours. In that time I had to change his diaper (it was not bad), and give him a bottle (I warmed it up and everything). The mom was always concerned and wanted to make sure Alex did not fall off the bed, or I'd do something really crazy like try to walk around with him. She would call periodically to make sure that everything was going okay. I only watched him for three months. When he got in his squirmy crawly stage I knew it was all over for me. That is when he would crawl over and stick his finger in a light socket, or crawl into a corner and I could not get it to him! I was so grateful for her giving me the experience.

Here is a pic of Alex 1 of the days he was at my house. Don't ya just want to squeeze him!! I wish he was smiling so you could see his dimples. He is a young man now, and I am sure he is a heartbreaker!! Man, I feel soooooooo old. I have not seen him since he was a baby. Not too long after the gig was up they moved, and we lost contact:(

If I were to try and do that now everybody would be insane. My FA has progressed very much so since then. I have a hard time taking care of myself let alone trying to take care of a baby. I still love babies!! I can have children, but do not feel that it would be a good thing at all. Healthwise being pregnant is not the best option either for me. I have friends w/ FA who have had children, and God love them cause I could not do it! I am not opposed to being a mother, but there are other ways to make that happen. I will cross that bridge when I get to it. I am nowhere near that bridge right now. Because I do have that mothering instinct it does make me sad to know that I will never be able to love a child in the way I want to. But life goes on, and we must learn to be happy with what we have! Everything happens for a reason, and God does not give us more than we can handle.

So tell me about your babysitting experience? Whether it would be your first or maybe something funny that happened like that the baby peeing on you when you changed its diaper!

Thanks for taking the time to read, MISS S

NOV 1992- GETTING MY RIDE

2007-10-19T19:20:00.000-07:00

I was so excited for the next step which was to go car shopping! I called up my dear friend from Crown Auto world (see post titled the Nutcracker) to see about possibly getting something there. His car lot sold new BMWs and Mercedes. Of course, that was out of my price range! So I would be checking out what was available on the used car lot. My dad went with me as he was the negotiator, and the test driver. They already had a vehicle ready for me to look at when I arrived. It was a 4-door, Metallic Blue, 91 Chevy Cavalier! My dad test drove it while I was sitting in the passengers seat. It drove very nice and smooth. The air conditioner worked really well, and the owners who had it before put in a really nice stereo system. A big thing also is that it did NOT have power steering, which was a great thing! Can you imagine my uncoordinated self trying to go in a straight line with power steering?? Me either:) ! I did not need to look any further. That was the car I wanted. So with little negotiation with the car salesman I got the car! I had been saving my money to be able to put a good down payment on it. I could not believe I had my own car.

I immediately called my voc rehab Counselor to find out what the next that step was to getting my car adapted. My dad took my car down to a place called Beesleys that handled mobility adaptions. They were going to put in the hand controls. They also showed me a device that would allow me to safely transport my wheelchair. It was called a chair topper. It kind of resembled a luggage rack on top of the car. It was a big box on top of the car, and it had a remote control with a wire that would run from the car battery to the box. The remote-control was very simple to operate. It was so easy even a caveman could do it! It had two buttons on it, one that said UP and one that said DOWN. When you pushed the DOWN button the box would slide out from the driver seat side. Dropping a chain down with a medal fork on the end of it, that you would attach to the seat of the wheelchair with. Then push UP on the remote-control, and the chain would start going up while folding the chair. After it got all the way up it would turn to the side with these brackets placing the chair inside the box, and out of the rain. It was a very cool thing. I had never seen one before.

Getting the money for it from the rehab, ordering the part's, not to mention the labor of doing it took close to a year to adapt the whole car. In the meantime my car became very familiar with the driveway. The hand controls were installed about six months later than about four months after that my chair topper was completed. When my hand controls were on I would drive around with my cousin Allen a lot. Having an extra vehicle made it nice for everyone in the household. A lot of my friends and family got a chance to drive the car.

I ended up driving for seven years. I definitely have more stories to share with you about my car and driving. I will do so when I get to it during that post. Now it is your time to share about your first vehicle?

Thanks for taking the time to read, Miss S

OCT/NOV 1992- I CAN'T DRIVE 55! (cont.)

2007-09-29T11:27:00.000-07:00

DRIVING SCHOOL
Every afternoon (Monday-Friday) a bus with a lift would pick me up, and take me across campus to driving school for 3 hours. Before attending the school I had to have my learner’s permit. I had no problem taking the test. I even had to make a trip to OKC, so they could see that I was disabled (duh)! I had the normal first day of class jitters. What will the other students be like? I hope the instructor is nice? I hope I don’t wreck the student vehicle or run over anybody!! 6 of the other classmates entered, and much to my surprise one of them was my peep Alicia!! I knew her from camp, and she was also a fellow FAer. The minute we saw each other we were both happy campers!! Alicia lived in Edmond. Alicia was just 16, and I am assuming because she lived there she knew about the school. We were friends at summer camp, but we did not have much to do with each other outside of camp. I always thought she had that Brooke Shields “Blue Lagoon” model look about her. Anyways, so we were instant class buddies. For the first day we took a simulated test to see which accessible adaptation would best suit us. Not everybody in the class was in a wheelchair. There was one person with one leg shorter than the other one, and someone who walked with a cane. I am not educated at all about the different options for driving. Almost anything can be adapted these days. Because one of the girls had a short leg she used break and gas extenders on the petals. Alicia and I were both in wheelchairs, and unable to use our feet. So we used hand controls. I think this is the most common adaption. It is a bar that is below the turn signals, and you push down for gas and in for break. There is a toggle switch on the bar for the turn signals so that you don't have to take your hand off the bar to do so. There is also a knob on the steering wheel to make full turns. After figuring out what everybody needed we spent the rest of the week practicing our driving on the simulation modules. When it was time to start getting on the road with the vehicles there were several instructors, and we had partners. You will never guess who my partner was? It was Alicia! Our instructor was a young good-looking preppie guy! Alicia and I were both happy about that, for now anyway. So Alicia and I would take turns driving the vehicle. We never really went on real busy streets or highways. I do not remember what kind of vehicle it was, but it was four-door, a brown color, and it ran! I was able to stand up and transfer into the drivers seat. God has blessed me with really long legs, although I think he forgot that I wouldn't be able to use them!! Since all the length was in my legs I sat on a cushion so I could see over the steering wheel. I would leave my wheelchair in the building. The next two weeks consisted of Alicia and I taking turns practicing driving with the instructor. I was proud of myself because I was not bad at going in a straight-line, but I could not get turning! I would overturn the wheel every time. One time we did go into somebody's ditch on a residential street. Thank God there were no children around! Through out this time the instructor and I tried to start up a friendship, but it was not meant to be! He knew who I was from back in the day (being homecoming queen, and getting my diploma), and we even had a friend in common. I do not remember his name and that is quite all right with me! He was getting frustrated, and so was I with the fact I could not get the turning thing down. One of the days he decided to teach us how to parallel park. I was a nervous wreck (no pun intended!) when I realized what we were doing. I had to park between 2 cones. I did it over and over. Surprisingly I only hit the cones once, and it was not hard enough to disfigure them! The instructor and I only spoke to each other when necessary. Alicia and him seemed to get along great-go figure. The straw that broke the camels back was when I saw him and Alicia come back from their driving lesson carrying a bag of tater tots! I was like “NO THEY DI-N’T!” They just took away time from my driving lesson to go have a little brown bag special at the Sonic Drive-In! Apparently Alicia was driving good, me on the other hand was not. I was still not sure of turns, and we only had the week left to practice before the big test. I thought I would give him a piece of my brown bag special mind, and see if he liked it. So I went to the head instructor telling him of my frustrations with the other instructor, and my problem with turning still. Because Mr. Brown bag was not the only instructor so I asked for another one. The head instructor took me as his new student. We used the same vehicle, and he was so patient with me. It made me not frustrated, and I got the turning technique right away. I never had to face Mr. Brown bag for the rest of my schooling.

THE TEST
I was feeling good that day as we got ready to go to the DMV (Dept. of Motor Vehicles). Of course, the exam was on unfamiliar territory. I was doing fine until they called my name. I was again going to be driving the same vehicle so that was good. I got into the drivers seat, and a policeman got into the passenger seat. That is when I wanted to pee my pants, and call my mama! I tried to make small talk with him to break the ice. We went on a busy two lane street. He asked me to move into the other lane. It made me nervous to do that. I had a bad tendency of turning the wheel when I would turn my head to check my blind spot. I looked in the rear view mirror as I saw it was clear I then checked my blind spot. I did it! The policeman then instructed me to turn into a residential street. My turns were very smooth. As we came up on a street we saw two cars that were parked on the side, and there was room for another car to park in the middle. So he told me he wanted me to parallel park in between those cars. You talk about nervous. I am a girl, and normally have no ideas about the make and model of a car. But I do know the symbol of a BMW! That was what one of the cars was that I was to parallel park in between. Forget peeing, I felt like I was going to s**t at that point! I told the policeman I was extremely nervous, and he told me if I felt like I could not do it we could go back to the DMV. I was not about to give up just because of a BMW! I proceeded. and did it just like I had practiced with the cones. I kept telling myself that they were merely cones. I was barely inching into my spot, and gaining a little confidence.... when BAM!! I just knew my life was over as I had hit someone else's car. The policeman said, "you just hit the curb." I was so relieved. He told me to turn out, and go back to the DMV. I was shaking and almost in tears as I really thought I had just failed. As we pulled into the DMV he asked me to park in one of the spot's. I did not do the best job at parking. As I shut off the car I asked him what the damage was. He told me I did a good job and passed! I could not believe it. I told him I thought I was so goner when I hit the curb for the parallel parking. He told me that I showed him I could do it, and that even though I wasn't perfect at it this time he knows I can do it. He said there isn't very many times that you will ever need to parallel park anyway. I was so excited. And eager to look at my old instructor in the face, and smile really big:)

I know a couple of professor's at UCO now, and they tell me there is no more driving school for the disabled there:( Hoping thats because there are more places to go.

Soon after returning home from getting my driver’s license my friend Tonya threw me a surprise party for passing my test! Several friends of mine from high school were there. It was fun for us all to be there together. The cake was shaped like an Oklahoma driver's license. It was very sweet and thoughtful of her to do that for me.

Now tell me about your first driving experience? How did you learn? Did you pass your driver's test the first time? If you do not drive a vehicle you have probably driven something, power wheelchair, a bike, Scooter, a virtual car, you get my drift. Tell me about driving anything. Everyone's got a story of some kind.

Thank you for taking the time to read, Miss S

OCT./NOV 1992- I CAN'T DRIVE 55!!!!!!!! (Sammy Hagar, 1984)

2007-09-23T15:26:00.000-07:00

As I have mentioned in a previous post, before graduating high school I was hooked up with someone from vocational rehabilitation services in Tulsa, Ok. They helped and informed me about getting services due to my FA. Like helping me to get Social Security disability benefits, training for a job, and driving lessons! I was not aware that there was anything out there that would allow me to drive a vehicle. I always thought I would just be the female scrub hangin’ out of the passengers side of my best friend’s ride (Shout out to the group TLC, I love that song)!! I signed up for this right away. I think my parent's were not very optimistic on this one, but they supported my decision. The biggest obstacles that were in my way were the fact that the driving school was 2 hours away, and a month long. The driving school was held at the University of Central Oklahoma (UCO) in Edmond Oklahoma. The vocational rehabilitation would financially pay for me to have a helper stay with me, for room and board for me and my helper to stay at UCO during that month, and for the driving classes. Now I just had to figure out who my helper would be. Needing someone for the middle of October to the middle of November is a hard time frame to try and get someone. And it was only for a month. I asked several people, and finally my friend Crystal from high school said she would go with me. Crystal and I never really hung out with one another outside of school. I had all four years of Spanish class with her. She was my amiga!!

LIVING THE COLLEGE LIFE, AND DOING MY OWN THING!
My Mom and Dad followed Crystal and I to UCO, and they helped us to get unpacked. I seemed to have brought everything but the kitchen sink while Crystal brought everything from the boy band New Kids on the Block (sheets, comforter, pillow cases, u name it she had it)! We stayed in the accessible dorms. Because the ADA (Americans with Disabilities Act) had just became law earlier that year the dorms were far from being perfectly accessible, and still have quite a few barriers to overcome. There was actually only one hallway of accessible dorms there. They were coed. There were not many people living in them though. The first person we met was a gentleman named Jason who lived across the hall. He was an actual student, and in a power wheelchair. I do not recall what his disability was. He lived alone, and seemed to know everyone. He took us in under his wing, showed us around, and introduced us to other folks. He became our best friend while we were there. A funny moment was that every weekday during 11 a.m. he would watch the soap opera All My Children, and I would watch Young and the Restless. Crystal watched All My Children as well, and would go to his room and watch it with him. I could hear them screaming and hollering at the TV! Eating in the cafeteria with a bunch of strangers was intimidating at first. We were shy, and would have only small salads like we were on a first date! It did not take long to warm up to the other students, make friends, and eat normal! Everyone was so nice. Crystal and I were getting to live the college life for a month! No parents, no curfew! My parents were never strict or anything, but it was a grown-up feeling I had. I did run into a couple of peeps that went to school there that I knew. Small world! I also got to hang out with some peeps from MDA summer camp. One of them of course was a firefighter named Scott and his daughter. Another one was my Diva Jen (http://monkeyposh.blogspot.com)! We had actually visited on a couple of different occasions. It was so good to see her. Because of our living distance we did not get to visit very much (we now live in different state's so it is even harder). Because UCO was closer for her to get to we took advantage of it. I had a blast being there! Normally Crystal and I would go home on the weekends.

Below is a photo of Crystal (Top row: 2nd on left, blue-green top), Alicia (Sitting far left, friend from class, i talk about her a lot in the next post), me (in wheelchair), and Jason (to my right). From the first week we were there we went w/ Jason to his Christian group meetings. They were all wonderful people.

To find out what happened in driving school you must check the next post. Did I run over anybody? Did I wreck the vehicle? Did I pass the drivers test? I have been working on this for several days (my voice dictation has not been cooperating), and figure instead of letting you read it all at once I will put it in 2 parts. I have already started writing about driving school so it should not take long (cross your fingers).

What was your first experience like living away from your parents or being away from them for a good period of time?

Thank you for taking the time to read, MISS S

SEPTEMBER 92- LEARNING TO MAKE DO ON WHEELS!!

2007-09-09T13:12:00.000-07:00

Since being in the wheelchair full-time since graduation walking became something that was very rarely done. While standing was something I tried to do every day. I admit I was clueless, lazy, and there were days I did not stand at all. Of course I look back now and wish I had paid better attention to my mom when she would say to me "If you don't use it, you will lose it." It made things so much easier for me especially during those menial everyday tasks that I had even taken for granted before things got really difficult. Like carrying a full glass of something to drink. I could just sit in my lap, and not have to worry about trying to walk with it. Not to mention spilling half of it along the way. I used to sit a TV tray across my lap, and only connect one side of the legs to the tray. That way I would not always have to get out of my chair to eat. I did get out of my chair though when we would have dinner at the dinner table. I also had a door mirror that was on my closet door of my bedroom. I would sit in my chair with my curling iron, and make-up to get myself ready for the day. Before using the chair I would just sit on the floor (I would still do that from time to time as it was good exercise for me to get up-and-down from the floor). Because of doing this I had several burn marks on my legs, and on my forehead from trying to curl my bangs! If you didn’t know me you would think I was being abused! It is not very noticeable, but I do have a scar on the left side of my forehead. The pain I would go through, and all for beauty! I also had a lawn chair that would sit in the tub so that I could shower without having to worry about falling. Getting undressed to get in there was always tricky, but I managed to do it! The biggest obstacle for me at that time (and still remains) is going to the restroom. Because our bathroom door like bunches of the bathroom doors is the smallest door in the house my wheelchair was unable to fit in there. So I had to park my chair in the hallway, wobble into the bathroom, and shut the door. The stool was right next to the door. Because my balance was so bad I was having to lean against the counter to try to steady myself enough to get my pants down. I would end up with all of these scratches on my lower back because our countertop was not rounded at the ends. I had even fallen a few times. My parents both worked, and my brother had moved out by this time so I was home alone during the day. My kidneys and blatter were not patient enough to wait 8 or so hours. Imagine that! So our neighbor across the street, Harold, was a carpenter (he built his own house!) came over to look and see if he could widen our bathroom door. Without much hesitation he came over, and dropped what that he was doing. He widened the way and installed a new door. He even drilled a grab bar in the door so I would have something to hold onto that was sturdy instead of leaning against the counter. It was a big relief and blessing to have that done. Along with a great security factor. Harold never did charge anything for his time. Now that I could fit my wheelchair into the door it did not seem to take as much time to go to the bathroom, and I did not fall any more or have scratches on my back! Our bathroom was not huge so I could not do donuts in there or anything. I would actually go in backwards so that I would be facing the grab bar.

Harold is another big hearted individual that deserves a shout out on my blog! I have special memories with the whole family. I have mentioned some of those memories throughout my blog already. I try to keep in contact with all of them by way of Christmas cards and stuff. I mostly talk to Diane on e-mail. She even made a surprise visit to my college graduation a couple of years ago! I love them all!

I learned to make do with what I had around me at the time. I would love for you to share about a time when you had to make do with what you had. How did you do it? Maybe you can share a trick that would be helpful for not only me, but someone else!

Thank you for taking the time to read, Miss S

AUGUST/SEPTEMBER '92- I LOVE FIREFIGHTERS!!!

2007-08-26T11:03:00.000-07:00

For the past several years in August I would volunteer my time with MDA to go to 33 fire stations in three days to speak/motivate firefighters to do the fill the boot campaign to benefit the Muscular Dystrophy Association on Labor Day. Each year I enjoyed myself more and more as I really got to know what a bighearted group that they were. A lot of them knew who I was from previous years and would have warm cookies waiting for me. When it was time for lunch at whatever fire station we were at they would fix us lunch, and they can cook let me tell ya! I got rides on a fire trucks, and they always made me feel so welcome. Not to mention a lot of them could burn out my flame at any time, if you know what I am sayin, LOL!! Every year when we would do this one at the firefighters would drive me and one of the people from MDA to each fire station in the Tulsa area. We would get to know that particular firefighter pretty good as they were with us each day. As we were talking in the vehicle I mentioned the fact that since I am now in the wheelchair full-time, and my house had steps I was not able to go outside of my house by myself. Our mailbox was on our fence across the yard, and I was not even able to go get it any more independently. It made me sad, and I was not telling him to figure out a solution to my problem but merely in discussion as he was my friend.

Little did I know, but he had spoken to several firefighters who he knew also did some construction work on the side. They took up a collection of money, bought the lumber, and called me to come over and build a ramp for me at my front door so that I could independently be able to get outside. I was very overwhelmed with emotion when I learned what they did. So six firefighters came over to the house with all of their tools, and the lumber. They sweated in the hot heat for about an hour and a half, and completed a very nice ramp that would gradually slope down. The new station got wind of what they were doing, and came out to tape a segment for the news! Before they left I gave them all big hugs (I did not care that they were sweaty), and begin to cry. None of what they did was to benefit them in anyway. I was so grateful, and would never be able to repay them. About a year and a half later we moved to Ft. Worth Texas (I continued speaking to the firefighters there, and was even flown back to Tulsa to speak to them one year!). The people who bought the house after us left the ramp up for several years as they told us that they had friends in a wheelchair, and the ramp would come in handy. My parents and I often drive by our old house when we go back to visit family and friends. The ramp was taken down about five or six years ago:(

Has anyone ever done something for you that was unexpected and did not benefit them?
I can think of lots of things in my life that people have done for me (even on a daily basis). I shared one of mine, and would love to hear one of yours. It can be big or small, but the meaning behind it all makes it grand! That is why I love volunteering, you get as much when you give as you receive if not more.

Thanks for taking the time to read, Miss S

18 AND LEGAL IN 92!!!!!!! [edit*]

2007-08-12T19:31:00.000-07:00

A few days before graduation was my 18th birthday! I did not have a big party (Graduating was my party!). My family sang in unison (Lord help us all!) Happy Birthday while handing me a cupcake with a candle in it! A friend of mine who worked for MDA, Christy, came over and we went on to eat then to the Ice Capades!

Turning 18 was a major thing for me because it meant that I could handle more things on my own without parental guidance and/or signatures like buying cigarettes, and making curfew!!! J/K, I had you going there..right? I mean to call the doctor, or sign and fill out paperwork, stuff like that. My mother was (and still is) a wonderful support, but she is a pretty big procrastinator on some things. She was also working during this time which also made it hard to handle it all. Which was another reason I was glad to have more of the monkey on my back. A few months before graduating I was approached by the vocational rehabilitation in Tulsa to talk about my options due to my FA after graduation. They gave me the paperwork to fill out and turn in when I turned 18 to be eligible for Social Security and Medicaid. They would also help with driving school, and getting a car adapted. That was exciting to me for I did not even know it would be possible for me to drive! Not only that but they would also help financially with schooling. What a blessing this was. This was also around the time when I learned the true meaning of the word "red tape.” Forget that you have a disability for several months (or longer) until the government gets around to the paperwork! UGH! A really good friend of mine at the time, Carla, made it her mission to show me the ropes on how to be organized when it came to filing away papers, and in making things look neat. Carla was quite a bit older than me so she had experience. And she would be proud to know that I am still doing some of the things she taught me! She was my camp counselor a couple of years at summer camp when I was in HS. We also spent a lot of time together outside of camp during this time.

Thanks for taking the time to read, Miss S

SR'S 92- GRADUATION DAY WAS HERE!!

2007-07-31T13:47:00.000-07:00

As the day arrived I was excited and nervous. I didn't sleep very well the night before because of that. When Mike and Ricky got to my house so we could go to the Maybee Center together a news crew was there to interview me about taking the walk. As I had mentioned a little earlier in the post that when I was interviewed through the newspaper, or on TV they knew that walking across the stage was my goal. So I was interviewed by each of them again as a follow up for my goal. One of the newspapers came to the school and took a picture of me standing in the mirror with my cap on.

I was not exactly sure what the set up was going to look like at the Maybee Center or anything. Mike and Ricky were supposed to help me sit on the end of a second row. Then I was to go up on stage, get my diploma, and stay on stage, and sit next to the principal. I guess he thought I was going to do something crazy like moon everybody! Everyone filed in and the ceremony began as the graduation march started. The seniors began to come down the stairs. Mike, Ricky, and I were at the bottom of the stairs and off to the right waiting for our go ahead to start walking to my seat. I did bring my wheelchair, but had no plans to use it during the ceremony. So it stayed in the back. I made it to the seat fine. Mike and Ricky both sat near the back where I first started walking from. Us 92ers listened to the valedictorian, salutatorian, and the other speakers. The whole time I was looking (and listening) at the set up on the stage. Before the ceremony began I was asked to stay on the stage after getting my diploma, and to sit next to the principal. I thought that was nice of them to not make me have to walk back down the stage. As it was time for us 92ers to get our diplomas Mike and Ricky came to my side. We were first in line. In order to get up the stage we had to walk up the ramp. You would think that the ramp would be to the side, and that we would walk up to some steps. I guess they were not thinking when they built the stage! I am praying the whole time under my breath that I would not slip on this ramp. I had a death grip on Mike and Ricky's arm! They probably had bruises! I took one step at a time. There was a hand rail on the ramp so I used that while Ricky looked away, and gave my name card to the caller. I was the first name they called. As my name was called I began walking across the stage toward the principal to receive my diploma. There were TV crews and newspaper journalists to capture this historic moment for me (and it was a good human interest piece for them to share)! My concentration level was so focused on me getting from point A to point B that I really did not look to what was around me. As I reached my way to the principal I stopped to pose for a picture, and it was then I noticed that I was given a standing ovation! That really touched me. Mike carried my diploma in his left hand and so I held his right arm. We continued as I made my way to my seat on stage. There was one more step I had to face to get to the main stage. I was nervous about it, and also exhausted. Ricky said to me, "One more step Stephanie, you can do it." That meant more to me than he knows as it gave me the motivation to keep going. Once I got to my seat I let out a big sigh because I did it! It could not have gone any smoother. Without any more worries I observed my fellow classmate's getting there diplomas. Hearing their names and seeing their faces made me sad to realize that this might be the last time I ever see some of these people again. I began to cry and cry. One of the teachers was making a senior video and taped the whole ceremony. As I watched it later he had put the split screen on me during this point, and you could see tears rolling down my face. When all 133 of us 92ers got our diplomas and sat in our seats the principal went up to say a few things to our Class. At that time he read a poem that he thought represented what the Class of 92, faculty, and staff thought of me! I had no idea that he was going to do that, and I could not believe it! I never thought of myself as doing anything inspirational. I just lived my life. As he was reading the poem again the waterworks began! It was a very sweet poem and I am sorry to say that I do not remember the name of it. After reading it a couple of people that were already on the stage helped me to stand for recognition. I again got a standing ovation from everyone! I remember having so many goosebumps. Everyone knew that the principal was going to do that including my parents, but I had no idea. When the ceremony was over Mike and Ricky brought me my wheelchair. I was in shock that nothing went wrong! Thank you God! I went to the main room to turn in my cap and gown. The main thought in my head was that this is it. The last time I will see most of these people again. All I could do was hug my friends goodbye. Our graduation song was, "It's so hard to say goodbye to yesterday," by Boys to Men. That's song matched perfectly with the way I was feeling. We left there and a whole bunch of my family and friends went to Mazzios where we filled up on pizza and I got some really nice gifts.

From that moment on I very rarely got out of my wheelchair to do anything. I would stand at the kitchen counter to do the dishes, stand to get in and out of cars, and at other people's houses. I found it to be so much easier to be in the wheelchair. At that time I grew out of the fact of being self-conscious in it.

Thank you for taking the time to read, MISS S

SR's 92- DECISIONS, DECISIONS! !

2007-07-20T18:52:00.000-07:00

So now that I had my wardrobe and hair figured out it was time to make some more important decisions about graduation. I have mentioned numerous times before, I was the only person in my high school that was physically disabled. So besides the temporary physical disabilities like a broken leg or sprained ankle I was it. The school was not accessible so I had to fight to stay on my feet to go there. I was glad I did it for it kept me on my feet longer. At the time I was physically worn out, my knees were hurting, and lots of times I was ready to throw in the towel. I do feel my grades would have been better if so much of my concentration and energy hadn’t been on my FA (they weren’t awful, just average). Here I was with no one to relate to or even understand what I was going through. After school let out and I would go home, nobody knew how lonely or isolated I felt. The support that I got from God, my family, friends, and the community is what gave me the strength to go on. If it wasn’t for them I do not know if I would have made it!!

When I had gotten Homecoming Queen and was interviewed by the newspapers/TV, they had asked me what my plans were for the senior year. I told them my goal was to walk across the stage at graduation, and get my diploma. We were going to be graduating at the Oral Robert's University Maybee Center. There was much more room there to accommodate all of the family and friends of the graduates. It was a place I had been several times for special events. Several weeks before graduation our senior sponsor, Coach Nance, came up to me and was very happy to tell me that there was a wheelchair ramp at the Maybee Center that I could use at graduation. I looked at him as if he were crazy. I told him that, “I was not going out like that.” That “I had walked all the way through school, and knew my time of walking was ending.” That, “At the beginning of the year I set a goal for myself to walk across the stage at graduation to get my diploma, and that's just what I'm going to do!" Now that that was settled I had to decide who would help me walk. At first I thought about having some fellow graduates walk with me. I had asked my friend Tonya, and she said yes. As we were talking she pointed out that it was each individual graduates day to feel special. That she thought I should ask a couple of strapping young Junior guys to help (In My Humble Opinion, she didn't want me stealing her thunder, LOL! J/K). So I told Coach Nance, and he was cool with it. It was no contest in my mind who I wanted to ask. My good friends Mike and Ricky. They were my two best junior guy friends. Mike and Ricky were both in my Applied Economics class during the last semester. Mike was the gentleman that I spoke about in a prior post titled, “Every Rose has its Thorn”. We had been friends since the beginning of the year. Mike was good friends with Ricky. So that is how we became friends. Ricky was the funniest guy I had ever met. Through his sarcasm and quick wit he had me as a friend at hello, LOL!! They had both helped me quite a bit from that class. I first asked Mike, and he said that he would be honored to help me. I got very vaklempt! I told him that I wanted to ask Ricky if he would be my other helper. Mike thought that was a wonderful idea, and he gave me his number. Ricky also agreed! I was excited, and felt confident that they would not let me act like a drunk and fall all over myself at graduation!!

The pic below was right before the ceremony. Left to right is Ricky, Mike, and I!!!!!!!!!

Did I fall? Did I not? How did it all end up? To find out these answers and many more please join me in the next post for the rest of the story!

Thank you for taking the time to read, Miss S

SR'S 92- STYLING ON THE RED CARPET FOR GRADUATION!

2007-07-12T14:31:00.000-07:00

The end was near! And it was time to get prepared for the upcoming big day which was graduation! First on the agenda was what to wear. The senior class ordered caps and gowns several months before the day arrived. We had been told to for the ladies to wear all white dresses and white dress shoes. My mom and I found a cute white sundress, and I wore the same white dress shoes that I wore during homecoming. Yep, the same white dress shoes without much traction on the bottom. I was going to be walking in them even more than I did before. I knew this was not the best option for me, but I did not complain. I did not want to look any more different than I already was. As a gift my mom and dad got me a real pretty sapphire and diamond necklace.

So that was done, now the hair. It was baby fine, long, and an auburn color with bangs and I had no real intentions of changing it. Several weeks before graduation my mom’s twin sister and her decided to frost each others hair. This was not new for them to do. As they finished frosting each others hair they wondered what to do with the leftover frost. My mom had the idea of frosting my hair with what was left, kind of like highlighting it. She had been wanting to highlight my hair for several years, and I would never let her. Except this time I agreed! Instead of putting on the hair cap, and pulling a little hair to highlight through the holes on the cap. I mean after all that is what you are supposed to do! But my mom's brilliant idea was to put on the hand glove, dip it into the stuff, and apply it to my hair without a hair cap on or anything. So she proceeds! I am not saying a word for I think she knows what she is doing with this stuff better than I do. The glove is on, and she dipped it into the frost. She grabs some hair from the center part of my head, and when she goes to put it on my hair the glove slips! I end up with a glob of frost in that one section. Mom is trying hard at this point to not show emotion so that I will think everything is going okay. I think my aunt was just pretending not to notice. Spreading the glob down my hair to try to not make it look like a big glob…"Yah, that’s a great idea!” Then she grabs the sides of my hair, and puts some frost on that. Thinking that she has covered up her mistake well we wait like 10 minutes and then washed it out. After washing and blow drying it I looked into the mirror and wanted to scream! I had a big platinum blonde streak down the center of my head! Along with two platinum blonde sides. I looked like I was smuggling a family of skunks in my hair!! I couldn't graduate looking like this!! I needed emergency hair care!! So off to Keeta’s we went. She didn’t scold us to bad, and proceeded to try to tone down the streaks with a darker shade of blonde. When it was all said and done for some reason the sides of my hair turned pink!! If I had it done for prom I would have matched!! The blonde streak in the center of my head was still there, but not as blonde as before. So now I just look like a tropical fish!! Much better don’t you think? When my mom would curl it and put half of it up in a pretty barrette it would blend well and look like it was done on purpose. After several washes the pink was almost gone. Thank God!

I was so devastated by my hair at the time that I just felt like sharing. I look back on it and laugh so hard. Of course, I have never let my mom frost my hair again. She jokes with me all the time about it. When we are at the store she threatens to buy a frosting kit!

Have a traumatic hair story that you would like to share? Don't be shy, we have all been there:)

Thanks for taking the time to read, Miss S

SR'S 92- WHAT GOES UP MUST COME DOWN!

2007-06-28T19:26:00.000-07:00

Daniel Webster High was not wheelchair accessible during this time. It was built in 1938 so it was not expected. That is until July 26, 1990 when the bill was passed for the Americans with Disabilities Act (ADA). In a nutshell, this bill gave persons with disabilities equal access to public accommodations and employment. So all public buildings had to be wheelchair accessible, accessible to the blind, and other disabilities. Being a teenager I was not aware that this bill existed, nor even passed. But I am thankful!! All buildings that did not meet ADA standards were given a deadline as to when the accessibility had to be done. Webster decided to take there time, and started work on an elevator in the spring of 1992. Because I did not know about the ADA I thought they built the elevator because of me. They wanted to give others with physical disabilities the same opportunities to go there as I had! What a crazy thought I had! As they began the construction process of putting in the elevator we could hear from class the drilling, hammering, and all that stuff that went on. At the end of April I was in my accounting class when our teacher (Coach H) who had an office at the front of the classroom, and in there he had a phone. When it would ring he would let one of the students get up and answer it. Students were always yelling out "I got it" as the phone would ring. One day the phone rang and I yelled out "I got it"! Coach just kept looking down and said “OK”. He then recognized the voice, and looked up laughing. A few days later as the workers were making all kinds of noise with the elevator one of my classmates asked the Coach “Why the elevator was not built before now so that Stephanie could use it?” Coach had told him “That I did not need it, that one day I told him that if he gave me an A that I would answer his phone. And I'll be damned if she didn't hurdle over those desks to answer that phone!" Everyone including myself was laughing. In the fall of that year the elevator was done, and there was a student going there who used a wheelchair! I was so happy. I went to school that October to see my friend Mike get crowned for the Homecoming King (Warrior Chief the 48th), and was able to ride that elevator to the reception. It made me a little vaklempt! I was glad that barriers were let down so that all different kinds of people could experience the great times at Daniel Webster High!

Photo from http://www.bestoftulsa.com/

Thanks for taking the time to read, Miss S

SR'S 92- PROM, "Pretty in Pink"

2007-06-20T07:29:00.000-07:00

From the beginning days of high school when I was just a little freshman I thought about my senior prom. What would it be like, what would I wear, would I have a date? Up until my senior prom I had seen some of my friends, and my brother go to prom and wonder what it was like for them. I did not have high expectations of even going in the beginning. I pictured myself falling on a decoration piece, spilling some thing on myself, or being asked by a policeman to walk a straight line! The summer before my senior year ever began a friend of mine named Steve tells me that when time rolls around for the prom if I need a date that he would love to take me. Steve was a counselor at summer camp, and had known him for several years. He was a great friend, and someone I felt comfortable with. He was a 24-year-old law student at the time, owned a fitted tux, and had a convertible! He always told me that he was just my backup in case I got no other offers. I was thrilled that he offered. So that was always on my mind, and was a weight off of my shoulders. As time got closer my friend Waco asked to me if I would go to the Prom with Alex if he asked me? I was completely shocked. Alex was a cool guy, and I enjoyed being around him. He always had me laughing. But I immediately got nervous, because I did not know what kind of expectations as my date he would have for the prom. It seems very stupid, but you hear stories about after prom parties??? He never led me to believe he wouldn’t be a gentleman, but other than at school or school functions I had never been around him. I did not know much about him personally. So my answer to Waco was, "Have him ask me, and I will tell him." Waco knew about Steve being a backup date. So I do not know if or what he said to Alex, but he never did come and ask me. He probably couldn't except a rejection from the little disabled girl! This was my thought, although I do not know what I would have even said to him if he did ask. That is one of them what if questions I have in my life, but I have absolutely no regrets in what did occur. But get this, a couple of weeks after prom a whole bunch of us were at our local hangout (Mazzio’s) celebrating the victory of a basketball game. Someone raised a question about how this one guy was treating his date like a piece of meat at the game asking if anyone else saw it? Alex said, " I did, and I would never treat a girl like that ever!" From that point on I had a crush on Alex! Go figure! Okay, back to the prom. My best friend from ninth-grade, Kari, let me borrow one of her formals. She had like five of them to choose from. They were all really nice dresses, but which one do I choose? The oldest one from a prom she went to in 1986! Hello, it was 1992 Stephanie!!! Leave it to me. It was pink with ruffles and lace. I was big into pink at the time so cut me some slack! It was not horrible. But anyway, I went to Nine West to get crazy pink shoes, and accessories. I had called Steve, and told him that if the offer was still good I would love for him to be my date to the prom. So it was all set. I went to my hairdressers (Keeta’s) to get my updo for the evening, and my nails manicured and painted pink. When Steve came in to get me he looked very handsome in his tux, and was grinning from ear to ear! I never saw Steve without a smile. He bought me a pink corsage, and helped me to put it on my wrist. I felt "Pretty in Pink!" (One of my fave movies!) I would have made Molly Ringwald jealous! My aunt had came over with her video camera to record us as we were driving off in his convertible w/ the top down. I brought my wheelchair for I knew it would be a whole lot easier for Steve to push me rather than trying to help me walk in my pink dress and crazy pink shoes. I knew the main problem for that evening was going to be my crazy pink shoes! They were a ballet type of shoe with no heel but they were harder than all get out to keep on. I just knew that those crazy pink shoes were going to cause me so much trouble. We headed off to a really nice restaurant where we had reservations. It just happened that there were also some friends of mine there for dinner before the prom so we got a big table and all sat together. Steve had ordered a beer, and I do not blame him at all. I would have bought him one if he didn't get one already! The dude was 24, had just taken the bar exam, and was sacrificing his Saturday evening with a bunch of teenagers (all for me, God love him)! That would have been enough to drive me to drink as well!! So we get to prom. It was at the Petroleum Club in downtown Tulsa, Okla. The theme was Treasure Islands, and the tables were neatly decorated with treasure boxes, pearls, and costume jewels. We ended up dancing to two different slow songs, "Wonderful Tonight" by Eric Clapton and "The Dance" by Garth Brooks. On both of these songs Steve helped to me to stand. I never did fall. Shown below, is the picture that we took together while there. It is a really good picture of me standing. The crazy pink shoes behaved themselves quite nicely which surprised me even though they still managed to fall off a few times. God was definitely watching over me and my crazy pink shoes that night! As we were leaving we were given champagne flute's with the date and title of the prom theme on it as souvenirs. In the attempt to abolish drinking and driving Sonic Drive-In gave out coupons for free large soft drinks to every person at the prom. Do you think it worked??? That was our first stop after we left the prom! I probably got my fave which is DP, and Steve got a vanilla DP. I remember him getting that because the server guy over the intercom made a big deal of the fact that his DP would cost 10 cents because of the vanilla in it. We were laughing! My friend Bubba was having an after prom party at his church. The church had a big theater room were they rented movies and had tons of snack food. That is where we headed. About six other couples joined us there. They rented three movies We stayed for the first movie (Uncle Buck, it was ok), and half of the 2nd one (Don’t Tell Mom the Babysitter’s Dead, was good and have seen the whole thing tons of times now). Steve had a long drive home so we did not stay, but we were there till 2 in the morning. As we got to my house he walked me inside. I gave him a BIG hug, and he kissed me on my cheek!! He made the prom a wonderful memory for me. I would love for you to share your story about your prom, formal, or similar event.

After prom, for several years we did keep in contact with one another. He was a very busy and successful lawyer with his own law firm in Bartlesville Okla. After moving to Texas when I was almost 20 we lost contact with each other. In February of this year after about 12 years of no contact I found myself thinking a lot about him so I gave him a call. I spoke to his mother who informed me that he was no longer with us as of late August 06. He had a long hard battle with leukemia. I still cannot believe it. It makes me so sad that I did not make myself stay in contact with him. Life can be taken away so easily. So cherish those who are in your life. It doesn't take much to let somebody know that you are in their thoughts.

Thank you for taking the time to read, Miss S

SR'S 92-EVERY ROSE HAS ITS THORN! [edit*]

2007-06-14T14:22:00.000-07:00

Not only did I live with a challenge every day, but it was also a challenge when helping me sometimes! As I have mentioned before one of my classes my senior year I was a main office helper. My duties consisted of answering the switchboard, and being courteous to those who came in to the main office. There was one other student who was a main office helper as well. His name was Waco (no lie), and he was the errand runner! Waco and I became really good friends. He was also a senior. He could make me laugh, and even though we were the only two students in the class he was the class clown for sure! Going from that class to my next class (Spanish) was my longest travel for the day. I knew this before the school year began, but nothing was about to take me away from taking Spanish. For I had to go up some steps to get to the outside of the building, then down some more steps and across to another building...BREATH…up three more flights of steps, and down the hall to get to my destination. Man, that wears me out just talking about it! Because I was allowed to have two people help me to class across the hall was the attendance office. There were two students who could help in there. One of them just happened to be best friends with Waco and his name was Alex (was a Senior too). So he would go with us and be the book holder while Waco would give me piggyback ride's to Spanish class every day in the beginning. All was well, until Waco and Alex found out that I thought the other guy in the attendance office was cute! He was on the football team, and every girl wanted to date him (but SHUCKS cause he always had girlfriends), and his name was Mike (he was a Junior).

So then Waco and Alex began scheming with one another figuring out how to get Mike to help me. Alex would so conveniently be gone so that when Waco would come in to get him he would be gone, and Mike would help. At first I was embarrassed thinking that Mike would probably get on to Alex for being gone. Surprisingly, it did not take long for Mike and I to become friends. I would have to say Mike was somebody I completely adored, and felt so comfortable being around almost from the start. He was such a gentleman, and yes he was very nice on the eyes! He took over and started giving me the piggy back rides to class! It did not take long before Alex started coming along with us. Normally Waco would carry my books and Mike would give me the piggy back rides. Well, Waco and Alex were always scheming as you know, and they thought it would be fun to poke Mike and I in the butt with these thorns on this bush that was outside. DON’T FORGET I AM STILL IN HIGH SCHOOL! So here they go sneaking off to the thorn bush. They did this a lot to us so we got to know what they were doing, and Mike would start running with me on his back. He sacrificed a lot of times by running w/slick loafers on to spare us the pain!! From that moment on I knew he cared about me, LOL!!! I give the man credit because we never did fall! So you must be thinking that there has got to be more to this story? You are right. Leave it up to me! One day Mike was giving me a piggy back ride to class as normal. Waco and Alex went off to get some thorns as normal. Mike took off with me on his back, and we thought we were going to beat them. They ended up catching up to us as we began the second flight of steps. Showing us the thorns and laughing! At that point Waco tried to poke me. I reached over and tried to slap the thorn away. With my coordination I came nowhere close to the thorn, and slapped nothing but air! As my hand came around it landed right in Mike's ear… but it gets worse... I was wearing fake nails at the time… it gets much worse… my nail broke in two right in his ear!! Who would have thunk that such force would have come from a little slap? How embarrassing!! His ear was bleeding a little, and I felt so bad:( He claimed it didn’t hurt, but it sure left a mark! That was the only tragedy that came out of the thorns, thank God! It is something to definitely look back on and laugh! Mike and I knew that neither one of those guys were doing what they did to be mean.

The plot thickens though, as I was at my 10 year high school reunion talking to Alex as we were reminiscing about the good old days! He told me that him and Waco used to pick those thorns a couple of days in advance, and leave them on the sidewalk so they would get harder! Now that is mean, LOL! We laughed and laughed about it.

Thanks for taking the time to read, Miss S

SR's 92- LOTO ANYONE??

2007-05-31T20:00:00.000-07:00

I really have no idea why I am sharing this story, but I am! This was another memory for me during my senior year. Yo quiero Espanol! I took Spanish all four years of high school. We lived next door to Mexicans who would speak Spansh to me all the time, and I got to where I could understand them pretty good. I wanted to know more than they did (like that was ever going to happen), so I took all of the Spanish classes I could! I became very comfortable friends with the other students in my class. We were in Spanish 4 together and had the other three Spanish classes together. We were all wonderful friends with our teacher, Sra. B! Everyone in class was given a Spanish nickname. I was called La Rey which means the Queen. Our class was fairly small so the Spanish 3 class would sit in a different area but be in the same classroom. Sometimes we would have challenges between Spanish three and us. We played loto (bingo) all the time. It is played just like the English version. It gave us the opportunity to practice our numbers in Spanish. We decided to play win, lose, or draw and give the Spanish three a run for their money! Due it to my chicken scratch one of the girls was going to draw for me. They wanted to give me a chance to conspire with her on what to draw so they put a chair by the chalkboard. It had no arms to it. I thought to myself "I did not fall off of the no armchair at the Halloween spook house so I can do it!” So I got on the chair, right away it made me nervous, but my anxiety’s about it went away. I was sooo comfortable being me around these amigos. They were my amigos no matter how drunk I looked! So the games began…at first it was all calm. We (Spanish 4) were ahead! Spanish three was gaining the lead and we could not let that happen. So we all started shouting answers and getting excited. Not when I am on the chair with no arms! You guessed it, I lost my balance and fell to the floor. What a graceful move I made though by landing as though I just slid in to home plate! Like an umpire Sra. B told everyone "Time out" while I dust myself off, and get back to the game! I did not move to a desk which would have probably been the smart thing, but I get back on the no arm chair. The game resumed, and J Lo and behold if I did not do it again! I never hurt myself, and was laughing. When everyone else saw that I was okay and laughing they laughed right along with me! Of course, we (Spanish 4) won the game!!!!

I loved being in that class. I could be myself, and not have to worry about what anybody else thought. I struggle these days still with that same issue. I still find myself not wanting to do things because of the way I will look to others. There are few people I can do that with. Can anyone relate? Please share a experience. I would love to hear it.

Thank you for taking the time to read, Miss S

SR' 92- SENIOR ACTIVITIES

2007-05-20T20:11:00.000-07:00

This was an unbelievable year for me. I learned to be comfortable in bringing and using my wheelchair when I could at school functions. I was not left out of activities or made to feel any different like I thought I would. That's what I get for assuming! You know what they say about what assuming means? Ass + u + me!! It would make some peeps feel helpful just to be able to push me! Which made me feel good. Sometimes I would get out of my wheelchair, and let other peeps get into it and try to pop wheelies! The theme for the year was “memories last forever ", and I made sure I was not going to regret doing just that. I never once stepped down from doing things because of my disability. I knew a way would be found for me always. I've already told you about the Halloween costume contest and spook house. We also had a scavenger hunt at the big mall (Woodland Hills) in the area. Of course, I brought my wheelchair to use. It was short lived though, because we were asked to leave the mall! The hunt was sat up so innocently. Getting wrappers or receipts from certain stores. There were about 40 of us 92ers there along with some teachers. We were all wearing white sweatshirts with royal blue big letters that said "seniors 92"! I think we spooked the Barney Fife security for they were probably thinking "What in the world are all those there younguns in white sweatshirts doing at our shopping center?" We left and cheered ourselves up at our local hangout joint…Mazzio’s! Another memory was at Thanksgiving where we enjoyed making smores, and riding on a hayride at one of the teacher’s ranch. I brought my wheelchair this time as well, but feared running over road apples!! One of my good friends, and fellow 92ers, Melissa and I would go to every home basketball game together. It was accessible to get into the gymnasium. I would take my wheelchair, and sat at the bottom of the bleachers and Melissa would sat right behind me. After that game everyone would meet up….Where? Mazzio’s!! It’s time for the annual Senior Easter Egg Hunt held on the campus. We had really pretty campus grounds that were kept up so nicely. There was a little bridge with a babbling brook going underneath it, and lots of greenery and trees. This was heading from the main building to the stadium. Several teachers went out there to hide the eggs before. They were plastic egg's filled with candy and goodies! I used the nurses wheelchair instead of my own. I did not want to get mine all muddy, and I wanted to make sure that everyone knew that from the beginning. It was one of those old hospital looking wheelchairs, and I did not want anyone to think I was trying to be sexy in that! Because of my extra baggage they let me start hunting for the egg's first. My friend and fellow 92er Eldon decided to give me a push. But not a gentle push for we were on a mission to get us some eggs! It was easier to push me on the back wheels, because the little wheels in the front would get stuck in the ground. So leaning me back and letting the wind blow our hair was what we did! I can't remember how many eggs we found, but it was very fun! My last memory that I will share with you is when we went canoeing down the river. This was the same river that I went down on an intertube when I was younger with my parents. I did not bother bringing along my wheelchair. Peeps would carry me to the boat. We all knew I could get barely walk on flat ground! And yes when I had to go, well ya know, I went in the river! But we never did tip over!!

I know there were many more memories, but this is just the few that top my memory right now. I am so glad that I did not let myself not do those things. Look at the fun times I would have missed out on. The life lesson that I have taken with me here is to just be yourself. People are going to like you for being you. Do you have a fun school memory that you would like to share?

Thank you for taking the time to read, Miss S

SR's 92- NUTCRACKER

2007-05-13T10:47:00.000-07:00

Around the first of December in 1991 I was chosen to talk on a morning show in Oklahoma and represent us folks with Muscular Dystrophy. A highly respected gentleman who owned a car dealership in Oklahoma (Crown Auto World) was doing a fundraiser where the proceeds went to MDA. He came to promote that and I was there to represent. He was a very nice guy with a big heart. We became good friends. It was very early in the morning, and I am sure I had bags under my eyes to prove it! The owner spoke about making an appearance in the ballet performance of the Nutcracker in several weeks. At that time I had seen the Nutcracker a couple of times and loved it! I told him to break a leg for his debut!! He told me he would love it if I could come. He gave me three tickets. I was very excited about going.

My mom, my friend from school Maria, and I went to the show. I brought my wheelchair with me. It would be easier for me, and for those helping me as I was dressed up in a dress and had dress shoes on. My balance is worse when I am in dark places such as the theater, or outdoors and night. My night vision leaves something to be desired as well. You thought I was drunk in the light just wait for it to get dark!! There were a big group of people that were there to see the owner. Some of them I knew from MDA while some I didn't. We went into the theater together as a group. As we went to our assigned seats we realized it was near the front, and in the center. And of course there were not accessible seats nearby. I did not want to stay in my wheelchair during the play anyway so it was okay with me. One of the guys was going to help me to seat. Just as we were to my seat an usher came over to say that due to fire laws I would need to stay in the wheelchair, and sat in the wheelchair section. It devastated me to not get to sit with my group. My mom and my friend got to sit with me, but I still felt alienated. I threw myself my own little pity party. It was all my fault, and if it wasn't for my stupid disability we wouldn’t be subjected to sitting in tin buck two away from my peeps! Not only was I sad, but also embarrassed. I cried all during the first act. I tried to not let it show though, and keep a smile on my face. My peeps did come to chill with me at intermission. This did make me feel better, and tried to change my mindset and enjoy the rest of the play.

On the way home after we dropped Maria off at home I broke down and began to cry. I told my mom how I felt. She said "Look Stephanie, if you did not have this disability you would not know any of these people or be able to have the opportunities that you have had." It made me think. She is right. Something good always comes out of something bad. It put a new perspective for me on how I think about and deal with things.

This is something I still struggle with for as you know the saying that the grass is always greener on the other side. Having this happen though did make me think a lot about how I deal with certain issues. Sometimes it feels easier just to give up and be depressed, but who wants to hang out with someone like that. Have you ever had a situation like this that you would like to share?

Thanks for taking the time to read, Miss S

COMING SOON!!!!!!!

2007-04-29T13:21:00.000-07:00

Here is the skinny on why I have not been able to post lately. I just got my computer back after spending a week with the Geek Squad. They upgraded my disk space all along with cleaning stuff. By doing this they took out my programs, and had to reinstall them. It has been a pain in trying to find my old documents, my pictures, and music. I finally found most of it though. I use voice dictation to type. It is a device in which I talk into a microphone and it types for me. Well of course since they had to reinstall that software that means I had to retrain it for my voice, UUUGGGHHH! It is all time-consuming but know that you will be getting a posts soon, I Promise.
Miss S.

SR's 92- SMELLY ARMPIT (my 1st date)

2007-04-18T20:18:00.000-07:00

When I got homecoming queen there was a light that went off for me telling me that I may could get some attention from boys! Up until that point I was of no interest to the male species, but I was still not holding my breath to be any different. My brother was dating a girl at the time (they are not together now) who lived in a town about 30 minutes away from us. I was friends with her, and went to stay the night and hang out with some of her friends. This was right after I got homecoming queen. We went over to her friend Smelly Armpit’s house (his last name was pit, and to distinguish him this is an appropriate name for him. Just roll with it!). Smelly A was not in the room when I got there so he did not see me walk all drunk. I was sitting on the couch when Smelly A entered. We were introduced, and Smelly A began quizzing me on who I was. Smelly kept saying how familiar I looked. Then Smelly A snapped his fingers, and said, “You were homecoming queen. I saw you on TV.” Smelly A proceeded to call his mom telling her that she wouldn't believe who was setting in the living room right now. That was the first time I really felt like a local celebrity! Until then I had never been given a shout out. We spent the evening at Smelly A’s house just visting. Smelly was so funny, and cute too! Then went home to my brothers girlfriends house at the time. Smelly A was invited to my friends house to play pool. On the way back to her house her and another girlfriend were saying to me that Smelly A was so sweet on me. That they had never seen Smelly A act like that before. I did not know what to say or any thing, I had never known what it is like to have someone like you. Smelly was cute, and a couple of years older. Smelly A did end up coming over, and we played pool until like 2 in the morning. At this time he saw me walk and I explained my disability to him. Smelly A was okay with it! Smelly A was a gentleman. Flirting a little, but mostly laughing. Smelly A made me feel comfortable. Before Smelly A left he asked me for my number. I was surprised at that moment that I even remembered it! We ended up talking on the phone for a couple of months before we went out. From our conversations I thought Smelly A was a good guy. Smelly A didn’t seem all that smelly! I was 17, and thinking that was a good age to have a first date. So my first date was on Friday the 13th! I will not go into big details for it was not all that and a bucket of chicken. Smelly A showed up late bringing a sour mood, and wearing a red buttoned-down shirt! That set the tone. I was not about to bring my wheelchair with me, and made the mistake of wearing these leather boot looking things that did not have much grip on the bottom. I do remember Smelly A giving me a piggyback ride to the theater doors because it started sprinkling. Wasn't that nice of Smelly A? We ended up going to see a stupid supposed to be horror movie called "people under the stairs." I give it two gigantic thumbs down! Smelly A was the one who really wanted to see it. I found out later in the car as we were discussing how sucky the movie was that Smelly A was not planning for us to watch most of the movie if you know what I'm saying! I do not know who Smelly A thought he was??? That’s when things started to get pretty smelly! From there we went to El Chico’s to eat, and our conversation was not good. Smelly A showed a completely different side of himself! Smelly A took me home, and I did give Smelly A a hug and we never spoke after that. It could have been worse I guess.

Since then my dating life has not been any thing to write home about. When I was 22 there was some boy drama that has taught me a life lesson that I will tell then. I told myself not too long ago that I was not going to throw myself pity parties anymore about not having a relationship. If it is part of God’s plan for me it will happen. So tell me about your first date? Inquiring minds want to know?

Thank you for taking the time to Read, Miss S

Sr's 92- IS IT A TRICK OR A 23TREAT!!!

2007-04-08T19:24:00.000-07:00

It was a couple of week's before Halloween, and it was tradition for the seniors to have a spook house at the Halloween dance. So we (the seniors) began doing just that. I decided to be the bodyless girl. We used the old gym which was petitioned off by a wall going to the new gym. The new gym was where the dance would be, and the old gym was going to be the spook house. With a lot of thick dark trash bag looking things we made little rooms in there. We set up to do a lot of spookie things! Besides lots of help we had strobe lights, black lights, and lots of props. It was coming together nicely. We had a day where we went through a dry run to see how it would all work out. I sat in a chair with no arms which immediately made me nervous because of my balance. But stubborn me wanted to do this so bad that I would fight it. I probably could have asked for a chair with arms, but oh well. They then put a box with a circle piece cut out for the head over my head. Later they would put a sheet that was bloodied and an axe (not real) stuck in the box. They gave me a water gun so that as people went by I would yell, "My body where's my body and screaming" all while squirting the water gun through the head hole. I was so excited!

At school we celebrated Halloween on the Thursday before the actual day. The day started off well. The seniors had a Halloween costume contest in the morning. A lot of the seniors dressed up. I was at a racecar driver. My brother drove a Modified Odyssey (small race car) for several years. I borrowed his racing suit and helmet. If I remember correctly one of the gals dressed up as the Energizer bunny with a pink suit on and a really big drum. She won!! Everyone who dressed up and wanted to could get together and go to different classes parade around, and let the underclassmen see what you were wearing. I wanted to do it, but knew I would be wore out really quickly. They compromised to let me do a couple of classrooms with them, and then I would return back to my class. It was time to get ready for lunch. The majority of the time I would go to lunch with Tonya. We were in the same class right before lunch so the teacher would let her go get her car, and park it in the faculty parking lot for it was a closer. She would get me and we would try to leave as quickly as we could to beat the rush, and to be first in line to get our lunch that day. I got in her car and off we went. As she was leaving I was putting on my seatbelt. We were discussing where we wanted to go when she pulled out of the parking lot, and all of the sudden there was a loud noise. I hit my jaw on the dashboard pretty hard. At that moment it was like there was no sound coming from anywhere. I did not realize that the passenger front side (my side) was hit, and that the window had shattered till then. I put my hand to my face, and realized that there was blood. I did not feel deep cuts. I spoke and asked Tonya if she was okay. The first thing out of her mouth was, "My poor car!” O NO SHE DIDN’T!! not “I am okay are you okay?" This was her next question, that’s what I thought. She went into the office at school and told them what had happened, and that we were okay, and to call our parent's. My dad did not work very far from the school so he was there quickly and as was Tonya's dad. They had gotten me some wet napkins to see about the cuts on my face. It was nothing major. but would leave scrapes on my face. Because of the jaw my dad took me to the emergency room. My jaw was popping in and out of place, but did not hurt. So they did not do anything about that. They were concerned about the scraping on my face. There was even glass in the pocket of my leather jacket. It had been a while since I had a tetanus shot so they wanted to do that. Needles have always made me nervous even though I had gotten used to them. I saw a cute male ER nurse walking by the room and I told them I would do the shot with no problems if they would get that cute male nurse to hold my hand during the shot! They all laughed, but that is exactly what happened!! I knew what I was doing, LOL! We left the ER, and I went home. Tonya’s car was towed. She got the ticket for the accident but it was noone’s fault. There was a blindspot and she never saw the car coming. To this day my jaw still pops in and out. It gets stuck open sometimes especially when I yawn big. I just have to relax and massage my jaw to pop it back in. It still does not hurt. It could have been worse. It does not end there!

There was no way I was going to miss being at this spook house that evening. I had several phone calls from people inquiring of how I was doing, and that they did not expect me to be there. I told them they were out of their minds, because I was going to be there. I told them I was not hurt, and was ready to scare some folks! This was the first time taking my wheelchair to a school function. That was a big step for me. Everything was going to be in the gym, and that was wheelchair accessible without steps and only one floor. Nobody seemed to look at me differently being in it like I assumed. I arrived early so I could get my face painted. They worked around the side of my cheek with the scrapes to not get make up in those places. In order to get into this spook house it was a maze and you had to crawl on your hands and knees to get in. It was a little tricky for me, but I had help. When you left the spook house it was the same way. I sat in the chair with no arms and held on to the sides so I would not fall over. They put the box with a bloodied sheet and fake axe over my head. This also made me feel a little uneasy. They handed me the water gun, and left the room. I was by myself in the room, and waiting for the first victim! I could hear everyone else getting ready. We had a mad doctor next to me who was pretending to do surgery on someone. They put cooked spaghetti noodles on their stomach like it was their intestines. The other room next to me was a coffin, and a person who would jump out and scare you. We had a girl somehow hanging from a rope like she was hung. As everyone got in place they turned the lights off, put on the strobe lights and block lights. As those of you are aware people with the Ataxia do not have good night vision. All the other lights made me feel kind of dizzy. I stuck it out though, and I was gripping that chair like there was no tomorrow. When my first victim came I started screaming and yelling for my body, and the closer they got I hit them with some water from the water gun! They then took off. It was hard for me to try to balance myself and shoot the gun, so I dropped it on the floor and did not use it any more. After a little bit Bubba came over to tell me it was time for a break. I told him that I was going to need some help out of here. He said that he would tell the others and be back for me. Everyone left and all of the light's went off. I expected to see Bubba at any given moment... in just a second… at any time! I am getting very nervous with my balance in this chair for it is pitch black now. I cannot holler loud enough because the music for the dance next door is way too loud. Where was he? I wondered if my mind was playing tricks on me thinking it had been longer than what I thought. I had heard about five songs at this time. I thought about trying to remove the box from for my head. But I thought about what that might do to my balance to let go of the chair. What if I didn't get the box away from me, and it ended up that my whole body even my head is stuck in the box? If someone came they would have a hard time hearing me muffled in the box along with the dance music, and not see me so I would be in their forever!! I could hear and see two little kids running through the spook house. I told them to go get an adult, and let them know that Stephanie was in the spook house and needed help. They were being typical kids who probably didn’t even hear what I said , looking at me like I was crazy for not leaving. So they just continued running around in there. Finally, Bubba and a couple of other guys came to my rescue! Bubba just kept apologizing and telling me he was sorry. I found out later that as they were in the break room enjoying hot pizza one of the guys saw my wheelchair, and noticed me not in it. In asking where I was Bubba raised up, and said oh crap! Several guys darted to get me. What a nice way to end this story!!

Got a halloween story to share or a favorite costume? Thanks for taking the time to read,

Miss S

SMILE, YOUR ON CANDID CAMERA!!!!!!!!

2007-04-05T14:55:00.000-07:00

Okay, I finally made it to a scanner and have added some pics to some of the posts. If you look at the post titles on the blog archives (on the right of this page) and they have the word [edited] on them that means they contain pics. Most of the posts have more than one pic on them. I scanned a bunch of pics, but some you will not see until I make the post. Once I [edited] it did not seem like a lot. Anywho I hope you enjoy!!

Miss S

Sr's 92-HOMECOMING QUEEN (part 3) [edited]

2007-04-01T01:51:00.000-07:00

THE BIG DAY IS HERE!!!
I did not sleep well the night before for I was so excited about what was to come. The day was to be filled with such excitement. I prayed the day would go smoothly, but did not forget to give God so many thanks for the blessed day!

CORONATION ASSEMBLY
I got up in time to eat, put on a pink and white vertical stripped buttoned blouse (I hardly ever wore shirts that buttoned (still don’t), because my fine motor skills sucked (still do)), and off my mom and I went to the hairdresser's to get my hair done for the coronation assembly that morning. My Dad left in the opposite direction to go get my dress fluffed at the dry cleaners. A friend of mine at the time(from Camp) met us at the shop to put on my make up. Keeta made my hair look beautiful in a eloquent updo, and off I went to school. I went into a big room where all of the attendants were getting dressed and everything. I had tons of help getting in to my dress, and my slick white dress shoes. I was just praying I did not slip on those slick white dress shoes! Because I was physically disabled there were lots of revisions made throughout the whole day, and thank God for me! It gave me a chance to make fewer mistakes. I will tell you about them as I am talking about it. I was carried backstage into the auditorium and sat on a white wicker chair with royal blue ribbons weaved on the outside of the chair (school colors). Usually the homecoming queen walks down the aisle, but we can all picture how that would turn out! They gave me a long royal blue velvet robe that was tradition to wear. They helped me to place it where it would show, but not be sitting on it. The curtains remained closed as the audience made it to their seats. I could just hear a lot of commotion, and it made me nervous. Some of the band members began tooting their horns, and the curtains opened up. I was all by myself on the stage. I thought about making weird faces so everyone would laugh thinking that would calm my nerves, but I just sat there smiling. Introductions of the royal court were first. The male attendants (called the braves, the warriors was our mascot) wore black tuxes with royal blue cumber buns and ties, and the Senior female attendants were wearing white gowns, and the other attendants wore royal blue gowns. They walked down the aisle together to the stage, and stood in a staircase formation with the Seniors on the top row and so forth. Next was the crown bearer (Bubba’s sis, 7 I think) wearing a white gown and carrying a white satin pillow that held my crown, and the spirit leader which was a senior who wore Indian clothes and carried a lance (tall brown spirit stick with feathers on it) came after. After they were on stage the King (Bubba) came down the aisle looking sharp in his white tux as the audience stood to their feet. After he was on stage they recognized me by standing to their feet and clapping. The coronation began with the naming of the former Kings and Queens. A local TV station even came to film a segment for the news! Then a song was then sang giving tribute to me, I felt so special. One of my friends in choir (shout out to Laura), Wendy, asked to sing during the assembly. She had a voice that would make Simon Cowell cry, Paula Abdul give her the biggest seal clap, and Randy Jackson call out all the dawgs for her if she were on American Idol! She had approached me earlier about wanting to sing, but that she would keep the song a secret until the day she performed it. As the song started I immediately got teary-eyed. It was "The Wind Beneath My Wings," by Bette Midler. I cannot hear that song now without it giving me major goosebumps. It was now time for me to get the football from one of the senior attendants (it was suppose to bring good luck for the game for me to touch it, go figure). It is usually thrown to the homecoming queen, but as we know I can't even hit the broad side of a barn! For safety reasons he just handed me the football! Then it came time for the crowning. Ladies first, so Bubba grabbed the crown from the white satin pillow that the crown bearer had, and place to it on my head. Being a typical male he was not noticing where to place the crown, and smashed it down right in the middle of my bangs! God love him, but he probably did the right thing to keep it in place with all of the hairspray going on there! At that moment I was crowned Miss Daniel Webster the 54th!! I was asked to give an acceptance speech. As I mentioned earlier this speech was short but sweet. I had practiced it many times at home. But the minute those first few words came out of my mouth “I want to start by thanking my mom and dad…" I began to cry. What short speech I had left my brain with the tears. Bubba came prepared and handed me a Kleenex from his pocket. I tried to gather my thoughts and hold myself together so I wouldn’t look like Tammy Faye Baker! It was all a blur as to what I said, but I got through it! One of my really good friends to this day, Ricky, still gives me a hard time about the speech saying he was hungry, and that they couldn't leave because my speech was so long. He says I was thanking everybody and their brother, even the blades of grass! He cracks me up. It was Bubba's turn to be crowned. This crown was not the typical one that you usually see, but it was an Indian headdress with blue and white feathers. It looked heavy, but Bubba pulled it off very nicely. No, I did not place the headdress on his head. I would have knocked his eye out if I tried! He was then crowned Warrior Chief the 47th! He did an awesome job on his speech. This was a good thing, because I did not have any Kleenex for him! I was given a scepter while Bubba was given the lance. We had a few lines we had to say from memory and I was so nervous that I would forget them. But everything worked out smoothly. Due to the fact that everyone from the royal court had family and friends there to watch the coronation assembly made for not enough room to have the whole student body in the auditorium at one time. So there was two assemblies. We did the same in both with the exception of me not crying when I gave my speech the second time around. Nothing embarrassing happened so far. It all seemed so surreal to me.

I WOULD LIKE TO GIVE A TOAST….
After the coronation assembly we went upstairs to the library for a reception with cake and punch. No, Bubba and I did not feed each other cake! This was not a wedding reception silly! I did not really eat or drink much for fear of spilling it on my white dress (which would've happened believe me). This was a chance to talk with the guests who came to see us at the assembly. I got tons of compliments on my dress!! It was nice (I did not embarrass myself thank you God!), but of course we were only there for may be an hour and a half because we had somewhere to be….

A PICTURE IS WORTH A THOUSAND WORDS…

After the reception we made our way to the picture studio to get our royal court pictures on! They were mainly taken for the yearbook, but we also took individual pictures as well. They brought the white wicker chair that I sat in during the assemblies for me to use for the group pictures. We had fun with the group pictures as we were singing the popular country song at the time, "Shameless," by Garth Brook's! YEEHAW!! Bubba and I took pictures together where I would just sit on a barstool with no back. I was confident that Bubba had my back (hehe), and was not going to let me fall backwards. Everything worked out great! For my individual picture they had me set on this golden bench kind of sideways, and they spread out my dress to make it look full and to show off the pretty ruffles. They laid the scepter and dozen red roses beside me. You could even see my slick white dress shoes! The picture turned out good and the 8X10 is sitting on the entertainment center in my parent's living room as we speak in a very nice frosty glass frame. After the picture taking we were all hungry, and decided to meet up at a Mexican restaurant. But before we could do that we went home to change…

GETTING OUR GRUB ON…
After going home to change food was the first thing on my mind, and my stomach was making sure I knew that! The atmosphere of the restaurant could not have been more perfect. It was a very fun place with all different kinds of rooms you could eat in. They had a game room were you could win tokens to get prizes. You could be yourself and it was okay. You didn’t have to be stiff and proper. It was good for me because I know I spilled my Spanish rice on me and on the floor! As we left there we headed home to rest up for the evening halftime show…

TO REST OR NOT TO REST…
It was nice to put on a long t-shirt, curl up on the couch with a blanket, and rest my eyes for a couple of hours while watching TV. I was not (and am still not) a napper, but resting I can handle. While I was resting the school called my parents to tell them that a limo service saw my article in the paper that morning, and would like to give me a ride in their limo to the halftime football game. They wanted to present me on the field in the limo, but the school would not let vehicles on to the playing field. So they agreed to drop me off onto the school campus. So I put back on the pink vertical stripped buttoned shirt and headed back to my hairdresser’s shop to get my hair and makeup freshened up. My hair had been laid on, and my bangs were squashed from the crown. After it was all set we headed home so the limo could pick me up. As I got dressed I knew I would be standing on the field so I needed to be sure I had that extra support. I wore my Reebok white hightop tennies! SSHHH don’t tell!! My dress went to the floor so you didn't see them anyway. I also wore jeans under my dress for it was cold that day (October 4, 1991), and my bones had a hard time acting right in the cold. I knew we would be outside for the game, and I wanted to stay as warm as possible. As the limo arrived at my house I could see some of my neighbors standing outside to get a glimpse. I felt like a celebrity! I asked for some bubbly and strawberries, but they jokingly told me they left them at their building! SHUCKS, LOL!!...

TOUCHDOWN!!!
As the limo arrived in the circle drive to drop me off in front of the school the halftime football game was in the first quarter. Some of my friends were waiting for me as I got out of the car. Most of the royal court met me there. Some the guy were football players. Another revision came at this time for as we got ready to go to the field I rode a golf cart! I did not drive and that was a blessing! The driver's ed teacher did that one (How perfect)! When we got there the second quarter was about to be over, so we ended up huddling close together until time. It was so cold. The driver's ed teacher even gave me his thick leather jacket to put around my arms. The local news station was at the game to catch a spot for the evening news. They had interviewed my Mom, my dad, and I. We had to go around to the opposing side and walk/roll down the 50 yard line. The driver's ed teacher and I were jokingly talking about knocking down some of the opposing players along the way! Bubba was walking beside me in the cart, and the rest of the royal court followed behind us. When we reached our mark everyone stood on a stage and was introduced. But Bubba and I took a different approach! He helped me to get out of the cart and we walked a few steps under a white arc. They announced my name and the crowd went wild. Shivers went down my bended spine! I teared up for I couldn't believe that they were for me. I never wanted that feeling to go away. It was almost like I completely forgot that I was standing. I was not worried about anything at that moment. After that we all stood in front of the stadium on the field. I had a death grip I'm sure on Bubba's arm along with one of the other braves as the sang the alma mater. I sat in the stands for some of the second half of the game and visited with some folks before proceeding to the gymnasium for the dance. God love the Warriors football team but we did not win the game that night…

IF BUBBA CAN DANCE I CAN TOO!.. (fyi, it is the title of a country song)
As I entered into the gymnasium I saw a beautiful water fountain that was lit up in the center of the room. They had an arc that was decorated with navy blue and white balloons. There was a big sign that said "Congrats Bubba and Stephanie” it was awesome. It seemed like I had been waiting forever for Bubba to arrive so we could dance the first slow dance together. I was wore out. Bubba and a couple of the other football players who were on the royal court had to shower and change into their tuxes before coming to the dance. Thank God for me and the other gals, holding on to football sweat was not a good cup of tea! Right before they came the DJ came over to me, and asked if there was a slow song I would like for him to play. The slow song that was really popular at the time was "Everything I Do, I Do It For You" by Bryan Adams. I really liked that song, and so that is the one I chose. When Bubba and the other guys arrived we all standed behind the arc, and as we were introduced we walked under the arc. The freshmen attendants and Braves were introduced first and so on. I knew that this was the most nerve-racking moment for Bubba for fear of dropping me. I tried to assure him that if anything happens it is not his fault. I was nervous for myself, because I was very tired. Standing is not the best option for me when I am physically tired. It was a good thing I had on my Reeboks. We were the last to be introduced, and there was lots of hollering and clapping. That gave me my second wind to get through the dance. We went to the middle of the dance floor by the fountain, and I put my arms around his neck. He put his arms tightly around my waist. He held me so tight to make sure that I didn't fall that I had bruises on my rib cage! Just kidding, but he did have a pretty good grip on me which made me feel secure. Somewhere in the middle of the song he said to me, "They had to pick the longest song." I didn't realize how long that song was, and I wasn't about to tell him it was me who picked it out. I just agreed with him, and changed the subject LOL! As the song ended you could hear somebody yelling, "Dip her Bubba!" I felt as though I was floating on a cloud the whole time. I remember thinking I just danced with a cute boy!! We stayed there for a few songs then headed for home.

Several friends of mine (from Camp) ended up staying the night at my house. One of my aunt's lent us her camcorder for the day so we watched everything that went on. It was like a dream, and I felt that if I went to sleep I would forget. I could not have asked for a better day, and filled with no mistakes! Bubba let me have majority of the spotlight that day, and for that I cannot thank him enough! What wonderful memories!! Because of the newspaper articles and TV interviews I was kind of a local celebrity. I was recognized for a while after.

This was a long one I know, but thanks for taking the time to read, Miss S

Sr's 92-HOMECOMING QUEEN (part 2) [edited]

2007-03-25T01:20:00.000-07:00

PLANNING AND GETTING READY FOR THE BIG DAY
I had major outpouring of love and gifts during this time.

I have to admit I loved the attention, but still had a hard time justifying that reason that I got Queen. There was no time for justifying because I had a dress to find, an acceptance speech to write, and many more things to do and we did not have much time to do them in. Homecoming was about three weeks away. There were two attendants for each class (Seniors, Juniors, Sophmores, and Freshman), and it was my responsibility to tell them what to wear and how to fix their hair. Bubba was responsible for the guys. This must be what it is like to be a bride was what I thought (and I am still guessing on that one)! I had been good friends with one of the senior attendants, Kristy, and so I let her decide what kind of dress they should wear. After she picked out the pattern I had a meeting with all the gals and their moms. I told them I wanted this day to be as special for them as it was going to be for me. That I wanted them to do what they wanted with their hair, shoes, and jewelry decisions. On the same day that Kristy picked out the pattern for the attendant dresses I picked out my pattern for my dress. My aunt (moms sis-in-law) was going to make it, and so she was with us too. I visited with my hairdresser on a couple of different hairstyles we were thinking of doing. She wanted to do a hairstyle kind of like one that Julia Roberts wore in the movie “Steel Magnolias” for her wedding. Due to my hair being so fine it does not hold curl very well so she decided to do a trial run. She rolled it in rags! Where she learned this I will never know, but we were in Oklahoma, YEEHAW! It would have the shape of Nellie's hair on the Little House and the Prairie. When my mom took out "the rags" (that is exactly what they look like too) from a night of sleeping on them she had to struggle. When they were all out my hair it was in such tight ringlets that I could not even brush my hair. I had to wash it out to put a comb through it! It was funny. Needless to say we decided to use a curling iron and a bunch of maximum hold hairspray!! As I was at the hairdresser's she was telling me about the homecoming process at her daughters high school, and that they had to buy and wear their dresses before they found out who won. She said one of the girls had a very expensive and beautiful wedding gown. She did not win and never really got to wear the dress. She said she would have her daughter talk to the girl about borrowing it for a backup in case my aunts dress doesn't work. I was like okay, but I did not feel anything would go wrong with my aunts dress. My hairdresser had a nail technician in her shop, and set up an appointment for me to get my nails done before the bonfire the day before homecoming. The speech I wrote was short but sweet. During school we would have run throughs of the assembly, and of the half time show of the football game that night. On one occasion Bubba was helping me to walk by letting me hold onto him (he was not used to helping me walk). My knees gave out on me (this happened a lot), and I fell. I did not hurt myself but it scared Bubba pretty bad. He went over to Kristy and told her what happened and that he will never help again. He thought he was doing something wrong. Kristi set him straight and told him not to worry about it that it has happened with everyone who has helped her. The day before homecoming one of the local newspapers came to write a story on me being homecoming queen despite my physical disability. I felt all-important! After school I went to get my nails done. They were painted red and were long and pretty. Bubbas mom and little sis used my hairdresser too (Keeta was her name, and her shop was used by bunches in our area.) Bubbas mom told me that he is most nervous about dropping me at the dance (We were supposed to dance the first slow song together). I was surprised he mentioned that to be his most nervous moment. While we were there we picked up the backup dress.

Off we went to the bonfire. It was big and warm. Of course, we brought wire hangers and marshmallows! Loud cheers and clapping made the atmosphere.

Another local newspaper had come to interview me and Bubba. I was getting tons of attention because of this. I did catch some flack from being homecoming queen from the other students. I heard a few rumors that came from a couple of girls who I went to church with. What lovely examples of Christian behavior! One of the rumors was that I was giving one of the girls who was nominated dirty and snobby looks in the hall. So I called the girl (I considered us friends even though we did not hang out a lot or anything, but I had her number) to make sure this wasn't what she thought. She told me that we were cool and that she never thought those things. I told her who started spreading them. I guess she spoke to them. One of the girls came up to me at the bonfire to apologize. What jealous girls. There were a few other things that were brought to my attention. I tried to eliminate the rumors before they got out of hand. Other remarks I would just overlook. For the most part it was all good! After the bonfire my mom and I went to my aunts house to get the dress and try it on. For some reason it was not working though. My aunt kept going back upstairs to her sewing machine. The shoulder straps weren't hanging right. It was 11 p.m., and I was getting sleepy. We were all getting frustrated, but I am sure my aunt was the most frustrated. She makes clothes all the time. My mom went and got the backup dress out of her car. I tried it on, and it fit like a glove! It was beautiful with big ruffles going down the back. Everything happens for a reason! I was sad that my aunts dress didn’t work, but so glad at that moment we had the backup. Felt it was meant to be. I never did get to meet the generous young lady who let me borrow her dress.

Thanks for taking the time to read, Miss S

Next post: THE BIG DAY IS HERE!!!

Sr's 92-HOMECOMING QUEEN (part 1)

2007-03-24T14:40:00.000-07:00

THE VOTING PROCESS
About 130 seniors piled into the auditorium for the first senior meeting of our school year in September. Everyone sat with their own little clichés. It was the band geeks (as they were called), the popular crowd (cheerleaders, football players and other jocks), the head banging crowd (the rockers who would smoke, drink, possibly do drugs, party all night and sleep all day), and the loners (who would set by themselves but would always do anything just so they could fit in). I felt like John Hughes was going to walk in at any moment to direct "The Breakfast Club: Part Two"! I did not really fall under any category for a certain clique. I made my way through everyone and did not dislike any one person (for the most part). I felt like some were just misunderstood, and I knew all too well what that felt like. That was my group. The purpose of the meeting was to nominate the years King and Queen. It was a very big deal, because it would mean that you would reign over the school for that year. The day is celebrated with a coronation assembly, a reception, pictures out of a studio, crowning at the homecoming football game, and a dance. Each senior wrote on a piece of paper the name of a gal and a guy senior who they thought would represent the class and school well. As we were doing this I thought I could hear whispers of my name. I thought I was hearing things, because I never even thought I stood a chance of this. Later that day on the intercom the vice principal called out names of the top 10 guys and gals who made it, and asked that they report to the Library. I was in complete shock when I heard my name. At that time my class was office help answering the main switchboard. There was one other student in this class with me, and he was nominated as the King. He was a very good friend to me. So off we went to the library together. On our way he asked me what I thought about being nominated. I told him I was going to drop out, and that this was a big joke. We quit walking, and he told me he was not going to let that happen because I had more friends than I know. He sat by me the whole time we were in the library to in sure that I did not raise my hand to quit. My thought at that time was “Okay, I can do this, because next the seniors will vote again for top five and there is no chance that I will get that." After the seniors voted again I made the top five. I got very nervous at this time. I did not consider myself popular enough, pretty enough, not to mention my physical problems. I just did not fit the mold. After the top five from the seniors were voted on it went to an all school vote. All of the nominees were introduced at a pep rally held in the football stadium the day before the first game that night. We had to stand in front of the student body. I remember walking out with one of the other nominees. I had white Reebok high tops on (I had a white and a black pair, and I wore them constantly. They were the most supportive shoe for me walking), a pair of jeans, and my class of 92 royal blue jersey shirt with my name on the back. Hoping I did not embarrass myself by tripping over my two left feet! I did it, I just stood there holding onto my friend and waving as they said my name. I surprised myself by not dropping out before the pep rally. My thought at this time was "okay, I can do this, because now it goes to an all school vote and there is no chance I will get that." They will have five people to vote from but only three will make it. One Queen and two attendants. I am for sure sweating buckets on the day everyone votes! The decision was in, and we were called in to a classroom that was not being used at the moment. First, they had to keep us gals in suspense by telling the guys who got it. My friend Bubba got King! Don't laugh, everyone from the south has a friend or relative named Bubba. Am I right or am I right? Bubba was who I voted for. He was (and still is) an extremely nice (looking) gentleman, and a friend of mine since kindergarten! He was one of the stars of the football team, and fit the mold for being our King. I was happy for him. Then they announced the gals. Of course, they mentioned the attendants first. My name was not one of them. I let out a sigh of relief thinking that I was not getting anything. The other two gals who were not named either were very deserving of the title. So I figured one of them would get it, and that I would have been happy just to be nominated! Then they mentioned my name as the homecoming queen. I was in shock, and thinking there should be a recount or something! Maybe my ears needed cleaning for I thought they said my name! I was looking around surveying the room to see what the reactions on the other faces. Nobody looked pissed off, and some were congratulating me. Tears started rolling down my face. I could not believe it and was waiting to wake-up from this dream. The first thing I did once I left the room was call my parents. They were very happy! The Vice Principal came into the room as I was calling them and jokingly told me congrats, and that I could pay him for stuffing the votes later, LOL! I loved him. I came home and told my brother. He was so happy that he wanted to drop me off at school, and help me to class that morning. He never wanted to do that before. I remember walking down the hall that morning with my brother getting stares and hearing whispers that I was the Homecoming Queen. That was one of the first times I felt that my bro was proud to have me as his sis.

Due to the fact me sharing my Homecoming experience is longer than expected I am going to spread it out into 3 separate posts. So be sure to check in so you can get the whole story. Thanks for taking the time to read, Miss S

Next post: PLANNING AND GETTING READY FOR THE BIG DAY!

SENIORS '92 RULE!!!!!!!!!!!!!!!!

2007-03-13T22:02:00.000-07:00

Being a senior is what I had been waiting for. Physically I did not know if I would be able to make walking at school. My knees were giving out on me a lot, and my balance and coordination seemed to have progressed more. Walking any kind of a distance would make me out of breath. I had started using my wheelchair in the house during the summer which I had not done before. My mom and I had a meeting with the principal about a week before school started to make sure we were on the same page where my accommodations were concerned. For example, leaving class 5 minutes early, having two people assist me in walking, and the length of my classrooms between them. We had done this every year I had been there. And every year there was something else added to the list. The day before the meeting as a family we discussed the possibility that due to liability I would be going to another school that would be wheelchair accessible. This frightened me. I was comfortable there, and mostly everyone already knew my drunken self. So I did not want to have to start over. I had been to school since elementary with some of my classmates. The principal did not bring that up at that meeting. That was a big sigh of relief. There was other authority figures there as well. It was like they didn’t want me to leave, and were willing to do anything to keep me there. Made me feel good.

THE NEW CONCERNS/ACCOMODATIONS: Due to the fact that my brother had graduated my mom was now taking me to school. She would drop me off about 30 minutes before classes would begin so she could get to work on time. I needed somewhere I could sit to wait on class. English was my first hour class, and directly across the hall was the vice principal's office. I loved him (Mr. H-VP) as did everyone else. Mr. H was always joking around with us (he was my Aunts {dads sis} driver’s ed teacher, LOL). He was at the meeting and offered me to wait in his office, and that his secretary would gladly walk me over to class on time. I had known her for a long time. She was in PTA when my mom was during elementary school. Her cute son was in the same grade as my brother. Small world, huh? We became good friends even though she didn’t get me a date w/ her cute son! Mr. H would surprise me sometimes with a cinnamon roll and chocolate milk for breakfast from the cafeteria! What a good way to start my day! That was one concern taking care of, and the next one was the bathroom. Sometimes the bathroom was not close, and I would not have enough time to go to the bathroom and get to class on time. Even if I had a pass during class it may take longer than normal for me. They assured me that it would be okay. One of my classes was accounting, and the teacher had a rolling table in which I would sit on. One of the other students (girls) would push me to the restroom. It was down the hall. I looked so funny sitting on that long table. GO SPEED RACER GO!! I remember one time going into someone else's classroom when I was on the table just waving, and saying Hi! Another one of my classes was office help. I would answer the switchboard in the main office. They would let me use the restroom in there for employees instead of having to go to the restroom down the hall. It all worked out. I still got piggy back rides sometimes. After leaving the meeting I was wore out, and I knew what little I had walked was nothing compared to what I was going to do when school started. I was very sad and came very close to throwing up my hands, and telling my mom I wanted to go somewhere where I could use my wheelchair because I couldn’t handle it. I did keep going though, and am so glad that I didn't give up. My life would not have been the same at all as you will see in the upcoming posts. This year was filled with so many wonderful and funny memories that it will take about 9 posts to talk about. Those memories kept me going! Just to give you a heads up on these future posts, and to help my memory to not forget to talk about them I will give a short outline.

SENIORS 92
*Homecoming Queen
*Is it a trick or a treat?
*My first date
*The Nutcracker (ballet)
*Senior activities (scavenger hunt, hayride, canoeing)
*Playing Loto!
*Every rose has it’s thorn!
*Treasure Island
*The Season Finale

Staying in the same high school taught me some major life lessons. It taught me to never give up. There is not one person who does not require some kind of accommodations for something. Don't be afraid to ask for help when you need it (even know I still struggle with this sometimes), and know you are not alone. Just be yourself! No matter how unbalanced or how uncoordinated I was I was more happy, relaxed, and liked when I was just being me. I would love to hear any life lessons you have learned and how?

Thanks for taking the time to read, Miss S

IS THIS THING ON???

2007-03-09T21:37:00.000-08:00

The summer after 11th my grade year (’91) was full of speaking events for MDA. Since having done my first speaking event with the MDA in 1989 I have done several up to now (91). Each time I would get more confident with what I was doing, and enjoyed it more and more. Being the center of attention for my disability was a good thing at that moment. There were a couple of events that I spoke at this summer that stand out for me.

The first event was something I spoke at for a couple of years. It was for Service Merchandise, and about a fundraiser they did every year called the Diamond Dig. The first time I spoke there it was with my mom. They asked us both to speak. My mom went first and started crying as she was telling of me being diagnosed and how hard it was for her to know that both parents have to be carriers of the gene in order to pass it on. So what did I do but cry as well. After two years of speaking to the employees they asked me to come back again. Only this time due to scheduling conflicts someone from MDA was not going to be able to represent. So they asked me if I could handle it alone. I got to know throughout the years some of the supervisors and was comfortable. So I got a VCR tape from MDA to show, and they also gave me percentages on where the money goes that is raised. After that, all I had to do was share about myself. I remember feeling so good, wanted, and needed. They asked me back so I guess it was all good!

The second event was one I started this summer (91). It was at the fire department's in Tulsa, Oklahoma, and for the fundraiser fill the boot. It was to motivate the firemen to raise money in their boots by standing on the street corners, and asking people for donations. I went to 33 fire stations in three days! I absolutely fell in love with these big hearted guys. They couldn't hardly keep down the flame that was coming out of me after seeing them! But I didn’t mind them trying though! I got to know these guys so well I was invited to dinner and lunch with them at their station. When I would come to talk to them they would make me cookies, and give me rides on fire truck. I still to this day volunteer in going to golf tournaments and fill the boot campaigns for the firemen whenever I get the chance.

I have met and done some of the most amazing things because of MDA! Thanks for taking the time to read, Miss S

THE BEST BIRTH CONTROL EVER!!!!!!!!!!!

2007-03-04T17:21:00.000-08:00

Let's take a few steps back to right before my 11th grade year began shall we? My aunt (mom’s youngest sister) was due to give birth to her second child sometime in August. She was planning to deliver the baby in a birthing room. There she would be able to invite as many people in the room she wanted. My mom was there to see her first baby born, and this time she was going to let my mom and I both be in the room. I was excited. The call came in the morning as her water broke, and she was admitted into the hospital. Once we got there she was not in one of the birthing rooms, but just a regular room. All of the birthing rooms were full, and so she got stuck in just a regular room. She was only allowed to have two people in the room at the time of delivery. Without a doubt I knew one of them was going to be her husband. I figured she would let my mom stay again. My aunt looked at my mom. My mom said she would let me stay. I was very excited and nervous for my aunt. One of the nurses came into the room, and told me I was going to have to leave as soon as the delivery was to begin. I asked why. She said because I was too young! I said I was 16 years old, and that there were kids younger than me having babies. I told her that my aunt agreed I could stay. I looked at my aunt and she told her it was fine. They told me to stay in the corner out of the way. I was using my wheelchair of course. So the pushing and stuff begins. I was trying to push as much as she was! I could hear some other ladies just screaming down the hall as they were giving birth. I had seen the TV shows, and how possessed women can act and figured my aunt would be like that. Mind you she had no drugs! She had few moments when she was in pain and you knew it, but for the most part she was very calm. At one point she turned and looked at me to ask me how I was doing. I think having me there helped her not to focus on the pain. After I told her not to worry about me she then told me that the pushing wasn't hard! My eyes were big enough and she was thinking that it was a walk in the park! What a brave woman! The doctor said, "I see the head." So I unlock my breaks on my wheelchair, and scooted up closer so I could see what was happening. It was amazing to see a living, breathing, life! It was a boy! After the nurses cleaned him up they went to give him to my aunt. She stopped them and told them to let me hold him first. What an honor. I will never forget that. That baby boy is a grown man now who is going to be starting college soon. Do I feel old or what?

This was a big deal in my life to witness and I wanted to share. Thanks for taking the time to read, Miss S.

11TH GRADE (FALL 90-SPRING 91)

2007-02-28T21:59:00.000-08:00

After having such an awesome summer it was time to return to school. I enjoyed going back to school so I could see my friends one a regular basis. Even though I did not have a big abundance of true friends I had lots of acquaintances. One of the biggest things for me was that I was going to be an upperclassmen! Me a junior, I could not believe it. This meant I could go off campus for lunch. Tonya got a car that summer so her and I would always go to Taco Mayo, Carl’s Coney Island, Sonic, McD’s, or Arby’s. We would usually meet some friends there to eat. As the school year began walking to and from class wore me out quicker than before. I was not used to walking that much because I would mostly stay close to home during the summer. Of course it did seem to get a little easier the more that time went on (FYI, my high school was not wheelchair accessible in case you forgot). Like always I would set up my classes so I would not have to travel far. During this time I started having two people to help me walk. One person on each side to hold on to. I cannot remember who started it but I would get piggyback rides sometimes from the cute boys! You heard no complaints here! To be honest I think they did it just so they could get out of class early, but I didn't care because I was getting piggyback rides from cute boys!

I was enrolled in the same business class that my brother was when he found out that FA was a form of Muscular Dystrophy. I was also excited to be able to participate in the fundraiser for MD they were having that year. The club that was affiliated with the class was DECA (Distributive Education Clubs of America). Every year they would hold a state wide competition in Oklahoma City. It was on a weekend and would be about business opportunities and politics. They held several different competitions throughout the weekend. One of them was for public speaking. Because I was in speech class and had gotten an award everyone wanted me to go represent in the public speaking category. I was nervous about going for none of my good friends were in that class and going to go, but I had agreed to go. The topic of my speech was to be about leadership, but writing the speech was the farthest thing from my mind. I was all worried about who my roommate was going to be in the hotel room, wondering about getting in and out of the shower, if things would be easy for me to be able to do my normal routine, and who would help me with the small things. I ended up borrowing a couple of dresses to wear during the weekend from Tonya. Then I only had a few dresses that I would wear to church on Sunday mornings. I had an extremely difficult decision to make. I knew what I had to do. Since I would be wearing dresses/dress shoes for the weekend it would be so much easier to bring my wheelchair. This was the first time that my classmates saw me in the wheelchair. I was so afraid they would look at me differently and not want to be near me. I was so afraid of what other people thought of me so much it would put a haze on who I really was. As usual I was the only physically disabled person there. Everything ended up being okay. Everyone excepted the wheelchair, and some even liked sitting in it and trying to pop wheelies! My classmates were helpful when asked. I still had issues with asking for help. In my mind I appeared more disabled when I would ask. So I tried to do things all on my own. Instead of trying to take a shower and fall or something I just would wash up at the sink using soap and a wash cloth. To avoid having anyone see me make a fool of myself I would spend and lot of my down time by myself. I do remember spending some time with several girls in one of their rooms singing at the top of our lungs to “Hotel California” on the radio. I ended up getting third place on my speech! I was exstatic considering my focus had not been completely on the speech. All in all I had a good time. It was stressful for me and was glad to be home, but was glad I did it.

Did you ever take an overnight trip with a class from school? Did anything crazy happen? Thanks for taking the time to read, Miss S

BRINGING HOME THE BACON AND DESIGNER LABELS!!!

2007-02-22T18:28:00.000-08:00

What a hilarious and wonderful summer this was for me. Summer camp was great as usual and then getting a puppy, what could be next? My friend Tonya and her sister worked for a survey company in the mall, and told me they would help me get a part-time job there. To think someone would want a drunken person to represent their company was hard for me to imagine. So I didn't hold my breath, but I thought how cool would it be to work in the Mall. So I put in my application, and J Lo and behold they hired me. Tonya and her sister would let me bum a ride with them when they worked as well. I always used my wheelchair. It made things easier on me, and thought of it more as an asset to use it. Even though the sadness didn’t go away. Tonya and her sister were those ladys that you would run from in the Mall so you wouldn’t have to participate in those silly surveys! Sometimes they would just ask them questions, and sometimes the company would offer money to try a product. A product like cookies, crackers, diapers, deodorant, and even tampons! Folks will try anything for money. Especially when you are at the mall. I was hired to be the holler back girl! So the folks would try the product out for a week or two, then I would call them and ask them questions about it to see if they liked it. Even about the tampons! Can you imagine? So I would sit in a cubicle in the back room by myself usually and just call away! It was okay, but sometimes my voice would throw the folks off, and frustrate me. Thinking I was a little girl and was going to ask them if there refrigerator was running? Embarrassing when I had to ask the ladies if the tampon leaked a lot, a little, or not at all!! I even had some ladies hang up on me. I ended up not calling for those type of products. I told my supervisor that there was not enough maturity in my voice to call back on some things. She agreed, and was more selective when she would give me stuff. The best thing about the job was the money!! Even though it was only minimum-wage and part-time I thought I was rich. I would sometimes have my parents drop me off early so I could purchase those designer labels that my mom would not get me because of the price. I also learned to be frugal with my money and save it up. Making the dollar made me learn the meaning of it.

I only did this job for three summers, and it was only part time. It gave me something to do, and gave me a little extra money to play with. Thanks so much to Tonya and Shannon for all their help. The last summer I worked there (I was 18) I ended up meeting two of the gentleman I “called back” over the phone. One of them I went with on a lunch date. Nothing major happened, we went to a little Italian place. He was a very nice guy, bit we weren't meant for each other. Don’t even think we spoke after that (normal occurrence for me). I do not remember his name, but I do remember he had thick, shiny dark hair. The other guy worked for the pro soccer team that my parents and I would go to see every home game in Okla. I love soccer! The guy and I just talked and found out that we were at the same place at the same time, and so we met. Nothing major he was nice.

That was my first job now tell me about yours? Thanks for taking the time to read,
Miss S

THUMPER 5/31/90 - 1/11/06

2007-02-15T20:15:00.000-08:00

I had to mention my pride and joy for 15 1/2 years. I do not have a scanner/digital camera right now, but had this pic taken of him.

After Spanky died my parents were like exne on having any more pet's. One day while my mom, my aunt, and I were sitting outside in our backyard drinking tea and basking in the sun a few folks from my youth group came over for a visitation (personal invitation to come back to church) to see my brother. The guy (Sean) I had a major crush on was one of them! He was the same guy in the previous post who gave me his Bible to rest my head on. (This crush started in Middle School. In art class I drew his name out of macaroni, it was so cheesy I got the blues!!! LOL) As we were all in the backyard there were several little poodles next door that were outside. Sean asked me if I liked poodles. I said yes and that the dog we had lost several years ago (Spanky) was one of their brothers. He told me that he could get me a poodle for free. He said his mom breeds poodles. I looked at my mom with excitement, and gave her those begging eyes. She said she would have to talk it over with my dad first. For some teenage crush reason I thought it would bring the two of us closer by him giving me the dog. After much discussing, and pleading with my parents they said yes. I was so happy.

A litter was born at the end of May so we scheduled to come near the end of July to pick one out. It just happened to fall during the time I was recuperating again from knocking my knee cap out of socket. So I was in my wheelchair at the time with a knee brace on. I did not feel I was looking my best for Sean, but what ever I was getting a puppy! As we went to her house she brought out about eight puppies for me to choose from. The minute I saw Thumper I knew he was the one I wanted. He had an apricot color on his ears and down the middle of his back, he was the runt, the smallest one of the bunch and very energetic. Mom and dad saw this little chocolate colored poodle and fell in love with him. Knowing Mom and Dad would be doing most of the physical care taking I gave in, and we took the chocolate poodle home. After several days of being with us he did not seem he felt well. So we called the breeder, and took him back for observation. She said it was going to take a little while for him to perk up without his mother. She says It’s rare but some puppies do that, but he is okay. I was already attached to him. We named him critter. I understood that he needed to go spend some more time with his mother. She asked if I wanted to try another one and immediately without question I wanted the apricot one. So dad took me, and I never got out of the car.

On the way home I was holding him and we were thinking of names, but could not come up with any. A day or so later as he was in the front yard taking care of his business he went to throw up dirt using his back legs (their way of wiping). I am so glad us humans have other techniques like toilet paper! It was the cutest thing I ever seen because his legs were so short that he would just thump on the ground. It was then I said "look its thumper!" And that is how he got his name. (And my screenname!)

We all loved playing with him. He had a toy steak that when we would throw he would go get it then wanted you to chase him to get it back. He also loved pulling off your socks! Sometimes when he would come in from outside it was like he had gotten in to some loco weed! He would run around really fast and in circles. My dad would always say "He is just a funny guy, I wonder what he is thinking?" Thumper learned quickly that mom was his go to if he wanted anything. She was always giving him tablescraps. Ice cream was his favorite! He was a mama’s boy no doubt, and his throne was with her at the foot of the recliner. Anytime I moved he would stay w/ my parents. He would moan and act anxious if she were not there. He was a yapper and would bark at anyone that was not my mom, dad, bro, or I. There was only one exception, he never barked at my grandma (dads mom). We always used to say that he was my dog, born on my brothers birthday, and sleeped with my parents! He was not a big fan of being held. My mom could hold him the longest without him squirming. My dad would do it just to aggrevate him! He used to freak out at the thought of me holding him. My parents said he could probably sense the unsteadiness in my hands. We think he might have gotten claustrophobic from when he was born. Maybe the other puppies squeezed him. I am not sure it is a guess. When he was 14 he ended up having all of his teeth pulled except for 8 of them. His tongue would hang out of the side of his mouth. Gene Simmons had some competition during this time! He was no longer able to control his tongue and eat right. So we would hand feed him, and he was picky. Yes that we includes uncoordinated me. Can you just imagine that one! He would devour Chick-Fil-A nuggets from anyone’s hands though! That's my boy is all I am saying! He got that from me, I love me some Chick-fil-A as well! As time grew closer to his passing he began having troubles holding his bladder. Now I think he may have had troubles but he knew where he was making his deposits, because he would barricade me in with his poop! If I went anywhere I would roll over it. I have been there and done that, and having poop in your wheelchair wheels is no fun. So I would just sit there till someone came home. He was like having a kid or part of the family, and letting him go was so extremely hard on us all. My mom told me that her and my dad both cried themselves to sleep that night. I still find myself thinking of him and getting teary eyed. For example, typing this post has not made for a dry eye!

My parents are both saying exne on getting any more pets, but my moms knees get weak and her eyes light up when she sees another dog.

Do you have a pet story you would like to share? Thanks for taking the time to read,
Miss S

CAN U SAY 'EMBARISSING'???

2007-02-10T22:22:00.000-08:00

At the end of May I turned 16 (1990). My brother and I never had parties growing up, but my grandma (dads mom) would always make us a cake, and we would get gifts from the immediate fam. As we got older we would just have a Twinkie, and put a candle in it while the fam would sing to us. Also, we would normally get money for our day to spend on what we wanted. So with money in my hands from the birthday, and from making A’s on my report card (we got a dollar per A!) My cousin Syl and I went shopping at the mall.

My wheelchair had come in that I ordered, so I decided I would use it at the mall, since there would be a lot of traveling. Going anywhere with Syl was great. She had a way of making me feel like I was no different. That is what helped so much for me to be comfortable taking my wheelchair. Beside that it was an awesome candy apple red color, and Syl's Mom wrote my name in calligraphy on the back!

Syl and I had been in the mall for several hours, and was yet to find a piece of clothing to try on. So we stopped at the food court to quench our thirst on a Chick-fil-A soda. We ended up getting a big gulp and sharing it. I am not a big drinker (alcohol or any other kind) but I was thirsty. It did not take long for us to finish the drink. The mall was going to be closing soon, and I had to go to the restroom. So off we went, but on the way there with this outfit hanging in the window and being to cute. It was just my luck that we have traveled every store in the mall and did not find a single outfit to try on except when the mall was ready to close. Not to mention that we were on a mission to make it to the bathroom. But I really liked this outfit. So I had an all important decision to make. I could go to the bathroom, or hold it and go try on the outfit. Syl told me that if I felt I could hold it that we would stop at a station when we left. I was going to her house to stay the night, and she did not live near the mall. I felt as though I could hold it even though I had to go pretty bad. So into the store we went (the store will remain nameless, and the reason you will see) grabbing the outfit, and heading for the dressing room. We had 10 minutes to do this, and anyone who knows me knows it will take more than 10 minutes. With Syl's help I knew I could do it. The pants was the first thing I tried on. They were long, black, with a stirrup style. I was surprised how easy that was to get on. Now comes the top. It was made to look like you had on two blouses. There was material sewn in to the sleeves, bottom, and top of the blouse giving it the layered look. Because the top of the shirt was sewn together so well it was tight getting it on over my head. I lost my balance as it went pitch dark from the shirt being pushed over my head several times with force because it was so tight! I fell against the wall. I hit hard the wall hard, and know the people next to us in the dressing room had to have heard it. I have a tendency at times to laugh when nothing is wrong. I was not hurt, so I began to laugh. Syl quietly told me to be quiet because the people in the next room would get suspicious of what we were doing in there. The visual that took place as I thought of what the people were picturing as they heard the noise on the wall from my head hitting it, and the laughter from the room made me laugh even more. At that moment my kidneys decided to release, and go right down the pair of pants I tried on! I was trying so hard to stop it before it became a stream, but it would not stop. The next plan was to get them off without Syl noticing. So I looked in a mirror quickly, and decided that the outfit was not for me (I wonder why?). She took off the shirt, and while she was hanging it back on my hanger I began taking off my pants. I was also afraid she was going to start smelling it (EEEWWW, I know)! I got the pants off in record time, and told her that I could hang the pants backup. So she let me. We left but not before putting back the outfit on the rack. Syl had no clue as to what just happened. I just wanted to leave quickly. As soon as we made it to the parking garage I started laughing at what I did. Another tip about me is that when I am laughing I cannot do anything else. Syl knowing this does not say a word to me until after I am in the car. She started the car, but would not drive off until she knew why I was laughing. Talking about it made me laugh too. It took her a minute to decode what I was saying, but she did. She couldn't hold back her laughter at that point! She was probably scared thinking that I might finish in her car if she didn't hurry!

So off we went to the Quick-Trip down the street. As we arrived I left my wheelchair in the trunk for it would take too long to assemble, and I still had some business to finish if you know what I am talking about! We go up to the cashier and ask him where his restroom is. He proceeds to tell us that they do not have a public restroom here that it is for employees only. Syl gave him the emergency look mixed with a little deer getting caught in the headlights look, and told him that I was disabled, and really needed to go to the restroom. So to please make an exception. Of course he didn't want to be the bad man who deprived the poor little disabled girl to potty:) So he agreed. After that we had to go by my house so I could change, and then we left. I laugh so hard when I think about this story, and even had a hard time typing it due to laughing!

Moral of this story: Wash everything you buy before wearing it, because you never
know who tried it on or what they did in it!

Thanks for taking the time to read, Miss S

MY 10TH GRADE YEAR! 89-90

2007-02-01T22:32:00.000-08:00

On a general spectrum 10th grade was okay. It was weird without my sidekick (Kari) around. I felt as though I didn’t have to try as hard at friendships. I automatically belonged just by being in her presence, so that made things different for me. Due to the new found confidence in myself that I got through my amazing friendship with her, my wonderful summer at camp, and that empowering event for MDA that made things easier for me. Yes, my bro was now a senior but we were bro and sis if you get my drift. Physically I did not seem that I really progressed much, and was still stubborn.

As the door had opened up for me the summer before with my speaking engagement I decided to take speech class the following year in school. This was also the first year that speech was offered in my school. Our teacher had informed us that there would be a contest near the end of the semester. It had to be a debatable speech and that we should start preparing for it. This was the first speech contest that our high school had ever been entered into. I wanted to give it a whirl, so me and a few other students signed up. I came home a nervous wreck not knowing what I was going to speak about. I told my parents what I was doing, and my dad goes “hold on a minute”. He goes into his bedroom, and comes out with a bunch of notecards. He said he did this speech in Junior College over abortion, and got a B on it handing me the notecards. I read it and it was really good. It was not pro-life or pro-choice per se it was more like I am going to give you the facts and let you decide which road to take. I read it over several times and every time I read it I liked it even more. Of course I had to do a lot of tweeking to it to make it sound like it was from 1990 and not 1965! I was happy with what I had done. My dad had a Barney Fife look (Andy Griffith Show), held his head high, and often reminded me that it was his speech and that I owe him! So off to the contest I went. Still being stubborn I did not bring a wheelchair and wore a dress with dress shoes! Everyone looked so sophisticated and very smart in their. That was intimidating to me, but I went in there with confidence of knowing I could bring it! Right before it was my turn to go on my palms got sweaty, and the butterflies were in full force in my stomach. When it was my turn I began to speak and all my anxieties went away as I was in my element. We went to an assembly where they gave out the awards. I knew I did well, but did not expect to get an award. There were people that had competed in these kind of contests for a long time, but J Lo and behold it I didn't get first place! It was an awesome feeling. Of course, my dad was strutting around like he was the winner. He couldn’t believe it because he only got a B on it! I told him that is what happens when you leave things up to a female!! LOL

Thanks for taking the time to read, Miss S

I LOVE THE 80'S (THE OTHER HALF) [edited]

2007-01-27T22:20:00.000-08:00

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 HAIRSTYLE
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 FACE
I 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 WARDROBE
As 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 S

YOU WANT ME TO DO WHAT?

2007-01-21T21:17:00.000-08:00

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

HELP! I'VE FALLEN AND I CAN'T GET UP!!

2007-01-17T14:06:00.000-08:00

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 the 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 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

MY VERY FIRST SUMMER AT MDA CAMP:)

2007-01-09T22:10:00.000-08:00

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 www.mda.org. 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

MEETING SOMEONE W/FA!!! [edited]

2007-01-03T16:00:00.000-08:00

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

FRESHMAN YEAR- BACK SURGERY

2007-01-01T13:42:00.000-08:00

HAPPY NEW YEAR!!!!!!!!

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

FRESHMAN YEAR- I AM WHO???...MDA

2006-12-27T16:35:00.000-08:00

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 www.mda.org.

Thanks for taking the time to read, MISS S

FRESHMAN YEAR-HISTORY CLASS

2006-12-25T15:00:00.000-08:00

MERRY CHRISTMAS!!!
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

88-89 FRESHMAN YEAR- KARI

2006-12-19T22:43:00.000-08:00

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

MY FRESHMAN YEAR IN HIGH SCHOOL '88-89

2006-12-16T14:54:00.000-08:00

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

THE BEGINNING OF THE BARRIERS!

2006-12-08T20:40:00.000-08:00

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

THE ACCEPTANCE STAGE

2006-12-04T20:01:00.000-08:00

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

THE DEPRESSION STAGE (I don't care anymore)

2006-11-29T21:13:00.000-08:00

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

TH E BARGAINING STAGE

2006-11-20T14:56:00.000-08:00

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)

THE ANGER STAGE (why me)

2006-10-17T23:03:00.000-07:00

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

2006-10-11T22:25:00.000-07:00

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

2006-10-11T09:55:00.000-07:00

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

2006-10-03T20:26:00.000-07:00

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)

2006-09-25T10:47:00.000-07:00

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]

2006-09-18T09:01:00.000-07:00

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*]

2006-09-09T14:24:00.000-07:00

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]

2006-09-02T16:03:00.000-07:00

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

2006-09-01T19:36:00.000-07:00

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

2006-08-27T13:14:00.000-07:00

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]

2006-08-19T17:55:00.000-07:00

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?

2006-08-14T19:12:00.000-07:00

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