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.
Hi L. I just finished a 300-mile ride on my scooter (Doug & Gracie NYC-to-DC) and this post reminds me of my first public use of a scooter at Universal Studios in Orlando. This was my wife's suggestion, and it was a good one. Something I was forgetting was that while I was focusing on maintaining my normality and sense of independence, I was also raising her level of anxiety and concern over my safety. She was able to enjoy her time more when I was in the scooter because she didn't have to worry about me falling, others bumping into me, and me getting tired and slowing things down. It would many year before I used one routinely, but it was helpful then. I love what you're doing in your writing, sharing your journey with FSHD in a way that allows someone unfamiliar with FSHD to get a sense of what it's like. - Doug
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ReplyDeleteThank you so much for the comment, Doug. I love the attention you are bringing to FSHD with your trip from NYC to DC. Let me know if you would ever like to do a guest blog post. Let's keep sharing our stories :).
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