Friday, February 12, 2016

Long time, no talk!

So I know it has been too long of a while since I have posted anything. I am still here, life has just gotten in the way (I hate it when that happens)! In between the time from the post before this one and now I have edited, and added pictures to some of the posts. I have kept telling myself "I am going to get back into blogging! Writing is therapeutic for me, and besides that I still have a story to tell!! I have recently been approached by a friend who is willing to help me get a book about "What's in My Dash!" I am taking him up on his offer. So I am going to be busy yet again, and probably not posting much. However, I will try keep you informed!




Thank you for taking the time to read, Miss S

Sunday, January 18, 2009

MDA SUMMER CAMP REWIND- 1990

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

Sunday, January 11, 2009

MDA SUMMER CAMP REWIND-1989

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.


(CAPTION: I am located in the back on the left side standing next to Kari. If you went to camp and can name anyone in the picture I will give you a prize, LOL!)


(CAPTION: Not too long after posting this I became friends with David D on Facebook and he posted these pics, and I stole them!! So now I have pictures to share! I had every intention of putting them on here before now, but you just can't rush these things!! A huge warm fuzzy goes out to David for not only sharing his pictures with me:) but for also being the person who introduced me to MDA but also to summer camp! Lots of love to you <3 u="">
 
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!!!



(CAPTION: I am not too sure if this was the actual skit, but nonetheless it cracks me up!)

(CAPTION: This is the skit where someone keeps their arms to their side and someone behind them is their arms! Done by counselors. Wish I could tell what they were making them eat, or maybe I don't want to know, EWWW!!)

(CAPTION: I have tried several times to move the pic on the right. I thought I was moving it up the first time and then in stayed stuck where it is at, ugh! I am not computer literate, and have horrible mouse control thanks to my ataxia. So that pic will be sitting pretty right where it's at! And Greg and George do not seem to mind as they are the only person looking at the camera!)  I do not know how but I got it kinda fixed:)

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!







(CAPTION: Noo, Kari and Greg did not get mock married!! However, if I remember correctly Greg did have a schoolboy crush on Kari! You can kind of tell it to by the big cheese on his face, LOL!)

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 was “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.

(CAPTION: It was common for us ladies to pose for pics outside by the trees, great greenery, or in front of the cabins! What Jen did not realize was that her Shaquille O'Neal shorts would not be that years fashion statement!!)

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!)

Friday, December 26, 2008

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

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

Thursday, September 11, 2008

March 19, 1995 I GOT DUMPED!!

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

Saturday, August 23, 2008

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

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

Saturday, July 05, 2008

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

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