#CureFSHD Campaign

The FSH Society just finished an amazing campaign: #CureFSHD.  I was super excited to learn about this campaign because I felt like the purpose was to make people more aware of FSHD.  This was exactly my goal in writing The Graceful Art of Falling so I have been a big fan from the very beginning.  I will share some images from the campaign below.  Feel free to check out their website or facebook page for more information.

Scooter Time

I spent last week in Florida... at Universal Studios.  It’s been about 10 years since I’ve been to Florida.  I was super excited because we went to The Wizarding World of Harry Potter!  My mom and I were talking on the phone before we left and she asked if I would like her to rent an electric scooter to help me get around the park.  Actually, she said, “you’re probably going to be mad at me for asking, but…” I was a little mad at first, but then I realized it would probably be a good idea.

It was a good idea.  I haven’t been to a theme park in sooo long, and I certainly do not have the stamina I had ten years ago.  My dad had to put the scooter together and take it apart each day so that it would fit in the trunk of the rental car.  We were wondering how anyone who needed a scooter would actually be able to lift it and put it together- they probably couldn’t.  Luckily, I had my dad and we made it into a game; each day my dad tried to beat his time of taking it apart from the day before.

I mostly used the scooter to get into the park and from section to section.  I didn’t use it for many lines because I would have had to switch to a regular chair with someone pushing me. Given the fact that it would have been hard for me to get out of the chair, I just decided to endure the long lines.  I also walked around both Hogsmeade and Diagon Alley.  I couldn’t not- it was so crowded.  I was still tired by the end of each day, even though I probably walked 1/8 (maybe less) of what my parents did. 

Driving the scooter took some getting used to, and the crowds still caused me some anxiety.  I had to work my way through the people, slowing down and speeding up with the pace of the traffic while trying not to hit anyone in the process.  There were some close calls.  People just do not pay attention when they’re walking… especially when there are so many cool things to look at.  I guess I would rather have them looking around than at me.

As they glanced at me, I couldn’t help but wonder if they were thinking, “I wonder what’s wrong with her,” or “she doesn’t look like she needs that.”  Or maybe they were just jealous that I didn’t have to walk everywhere and were secretly wishing they had a scooter too.  When we were leaving Hogsmeade one day we passed a woman in a scooter coming the opposite direction.  I stopped to let her pass as others were just walking around and in front of her.  “It’s like I have an invisibility cloak,” she said smiling.  I appreciated the HP joke, but I felt kind of sad about the comment.  I don’t spend all, or even a majority, of my time in a chair, but I liked it better when people didn’t seem to notice me.  Maybe it’s because I didn’t quite feel comfortable with it.  I’m not sure why people don’t look at people in chairs (or scooters).  Do they feel bad for looking?  Are they not sure how to interact with people who have a disability? 

I know I sometimes feel awkward looking at people in chairs.  I often try to smile at them or say "hi"- but since I’m usually not in a chair I don’t know how that is received.   I’ve noticed that it’s people who know someone, or who have a disability themselves, that seem the most comfortable with it all.  It’s like we’re in an elite club that no one else really understands.  I will say this, I feel like I understand better what people who are in chairs go through.  Part of me already understood as I use curbs and avoid stairs when I can, but it’s not exactly the same.  I definitely understand how a chair or a scooter is helpful- it was extremely helpful on this trip. 

One day it probably won’t seem so terrible to me- because I will need it to get around.  Until then, though, I feel good about only using one when I absolutely need to… and I am so glad I did.  It was amazing to see the things I saw and hang out with my parents- I wouldn’t have been able to do that if not for the scooter.