HisBeautyHerBeast
Earning My Ears
- Joined
- Sep 24, 2014
- Messages
- 3
I love WDW, it is my escape from all reality, and over time I'm sure you'll get to learn that about me! But... There is one thing that turns me away from Disney every... single... time.
I am young, 21 years old, and when you look at me I look like a perfectly normal 21 year old girl. And that's where most people are wrong. I actually suffer from multiple brain/neurological conditions, a heart deformity/disease, severe anxiety, arthritis, severe scoliosis, and many other things going on. I've had 2 brain surgeries, 2 surgeries on my left hip that needs a replacement (which they won't do because I am still too young for it to be covered), stomach surgery, and ENT surgery.
I also have spine surgery, heart surgery, and a possible brain surgery in my near future.
I fight for my life every day, but I manage, I am always in constant pain and always fatigued.
My DBF and I went to Disney in February and we had dinner at Crystal Palace. Everything was running pretty late and the waiter was nowhere to be found, but it was right before the fireworks. The fireworks are my thing! I can NOT miss the fireworks EVER! So after we finally paid the check we had 2 minutes to get outside to see the fireworks. We had been in the parks all day, and I was in the wheelchair, but I opted to experience the fireworks on my own two feet! (I can be very stubborn) When we got outside, we were in an apparent "walkway" and instead of a CM nicely telling us, I got screamed at. My DBF and I started to walk away to get out of the walkway, and I have an a very clear limp and cannot walk fast, yet the CM followed us still screaming that we need to move. Can you say embarrassed?!
We went back to the room and I cried the rest of the night. Regardless, the firework show was ruined. WDW guest relations were very apologetic and I was fine. Not everyone can be perfect!
Then it happened again... We stayed this past week and I was confined to a wheelchair the entire time, I was just in the hospital for 4 days the week before for my heart not functioning correctly, and not getting enough oxygen.
One night, we decided to go to BLT to watch the Wishes firework show, since we had only seen the Hollowishes show this visit.
We had relaxed all day, I felt I would be capable of traveling there without the chair and feel some sense of normalcy in my favorite place in the world. We saw the show and decided to go to Boardwalk and explore a bit. We decided once we got to the resort, we would get a temporary chair and take a taxi back to our resort (AKL-KV). We took a bus from Contemporary to MK and transferred to a bus to BWV. While we were waiting for the bus to BWV, the line was really long. I kept squeezing my DBF's hand because I couldn't catch my breath, but I was okay. We got to the front of the line, and the bus was PACKED. There was no way I could stand on a crowded, moving bus so we decided to wait for the next one and lean on the rail, and try to catch my breath. (Yeah I know, I should've been in the wheelchair, but I told you I'm stubborn! :little angel:
After telling the person directing people onto the bus that we would wait for the next one, his exact response was "really?" We laughed it off and said yes we will wait. He looked at the people on the bus and said to them "Guess these two don't want to stand, whatever" then as the bus left, he says "why couldn't you stand? You're young" Not that it is any of his business, I said "well I've had two brain surgeries" He snickered and said "standing's good for you" and I just responded with "not for me" and said "well now you have to wait so."
Again... The embarrassment was unreal, tears welled up in my eyes and my DBF just held me.
I get the fact that I look perfectly "fine" but in reality, my body is very ill. I just cannot believe that this continues to be an issue for me, comments and questioning are so embarrassing. I didn't ask to be sick, I was born this way. I'm wondering if I need to start carrying documentation on me.
Besides all of the dirty looks I get from guests while in the wheelchair, or kids asking their parents why do I get a wheelchair and their answers are "she doesn't want to walk" HA!
Sorry for such a long story, I guess the moral is as old as time, never judge a book by it's cover!
I am young, 21 years old, and when you look at me I look like a perfectly normal 21 year old girl. And that's where most people are wrong. I actually suffer from multiple brain/neurological conditions, a heart deformity/disease, severe anxiety, arthritis, severe scoliosis, and many other things going on. I've had 2 brain surgeries, 2 surgeries on my left hip that needs a replacement (which they won't do because I am still too young for it to be covered), stomach surgery, and ENT surgery.
I also have spine surgery, heart surgery, and a possible brain surgery in my near future.
I fight for my life every day, but I manage, I am always in constant pain and always fatigued.
My DBF and I went to Disney in February and we had dinner at Crystal Palace. Everything was running pretty late and the waiter was nowhere to be found, but it was right before the fireworks. The fireworks are my thing! I can NOT miss the fireworks EVER! So after we finally paid the check we had 2 minutes to get outside to see the fireworks. We had been in the parks all day, and I was in the wheelchair, but I opted to experience the fireworks on my own two feet! (I can be very stubborn) When we got outside, we were in an apparent "walkway" and instead of a CM nicely telling us, I got screamed at. My DBF and I started to walk away to get out of the walkway, and I have an a very clear limp and cannot walk fast, yet the CM followed us still screaming that we need to move. Can you say embarrassed?!

Then it happened again... We stayed this past week and I was confined to a wheelchair the entire time, I was just in the hospital for 4 days the week before for my heart not functioning correctly, and not getting enough oxygen.
One night, we decided to go to BLT to watch the Wishes firework show, since we had only seen the Hollowishes show this visit.
We had relaxed all day, I felt I would be capable of traveling there without the chair and feel some sense of normalcy in my favorite place in the world. We saw the show and decided to go to Boardwalk and explore a bit. We decided once we got to the resort, we would get a temporary chair and take a taxi back to our resort (AKL-KV). We took a bus from Contemporary to MK and transferred to a bus to BWV. While we were waiting for the bus to BWV, the line was really long. I kept squeezing my DBF's hand because I couldn't catch my breath, but I was okay. We got to the front of the line, and the bus was PACKED. There was no way I could stand on a crowded, moving bus so we decided to wait for the next one and lean on the rail, and try to catch my breath. (Yeah I know, I should've been in the wheelchair, but I told you I'm stubborn! :little angel:
After telling the person directing people onto the bus that we would wait for the next one, his exact response was "really?" We laughed it off and said yes we will wait. He looked at the people on the bus and said to them "Guess these two don't want to stand, whatever" then as the bus left, he says "why couldn't you stand? You're young" Not that it is any of his business, I said "well I've had two brain surgeries" He snickered and said "standing's good for you" and I just responded with "not for me" and said "well now you have to wait so."
Again... The embarrassment was unreal, tears welled up in my eyes and my DBF just held me.

I get the fact that I look perfectly "fine" but in reality, my body is very ill. I just cannot believe that this continues to be an issue for me, comments and questioning are so embarrassing. I didn't ask to be sick, I was born this way. I'm wondering if I need to start carrying documentation on me.

Sorry for such a long story, I guess the moral is as old as time, never judge a book by it's cover!