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