Our family of four, along with a bunch of our extended family members, have been going on summer vacation together since 2019. Typically, we all go in together to rent a cabin somewhere. We’ve stayed in Tennessee, Georgia, and North Carolina. This time, though, we shifted gears and ventured away from the picturesque woods. When my brother-in-law pitched a few different options to us he included a house in Florida with themed kids’ rooms, a pool, and access to a clubhouse with more activities (like a lazy river). It was also nestled in Kissimmee with several theme parks nearby. These were huge selling points to all of the kids, so it was soon agreed that our vacation would take us further south.
When talks of a day at Universal theme park arose, I felt several needle pricks of anxious thoughts about the prolific amount of germs and people, whether I would want to go on any rides or not, and wondering what condition my body would be in that day. My husband and I had not been to Universal since 2007, when wondering how my body would fare was much less of an issue. Years and years of chronic illness, in addition to aging, have taken a toll on me. However, when the question was posed to me about whether I would want a wheelchair for the day I immediately bristled. I tried to keep an open mind about the idea and really give it thought, but the comments about how I could probably get my crew to the front of the line faster and other musings along that line, whether serious or not, made me even more stubborn about agreeing to a mobility aid of any sort. I didn’t want to feel exploited or different. I didn’t want to stand out nor draw unwanted attention to myself. I just wanted to be part of my family going to Universal.
Fast forward, I had managed to frequently put my feet up and rest my body in the days leading up to our big planned outing. My kids were bouncing-off-the-walls excited about the rides and what would be their first visit to any of the Universal parks. So, I was determined to be there and soak up their enthusiasm and enjoy myself vicariously, even if I wasn’t keen on the outing myself. Anxiety was winning the battle in my mind, which meant I did a lot of praying and attempted to focus on what I was looking forward to. Snapping pictures was at the top, along with trying some Butter Beer.
Since I had to be up earlier than I had been getting up to hit the park just after opening, naturally I didn’t sleep well the night before. A lack of sleep is never good news for my pain level, but I was grateful to be able to get myself around and out the door with everyone without hobbling. Once we hit the parking lot, the twelve of us emptied out of two vehicles. My sister-in-law had made all of us matching T-shirts so that it would be easier to spot each other, so we converged on the park in a sea of baby blue. My bladder was already protesting before we even entered the park, so everyone had to wait while I started hobbling to the nearest bathroom. I felt defeated as I rejoined them, realizing that the pain was only growing worse with each step, and I had a whole day ahead of me.
By the time we hit security I had shooting pain from my waist all the way down my leg, and was limping even worse. I had tears in my eyes as the defeat washed over me, and the reality of what lay ahead hit me. Swarms of people were already filing into the theme park, my body was unhappy to be upright, and anxiety was making a mess of my gut. My husband helped me as best he could to get through the checkpoints, and then my mother-in-law kindly took me to rent a wheelchair because I conceded to myself that even if I could grin and bear the pain of walking, it was going to be very slow-going.
In the short time it took for us to get to the counter, I worried that I would have to prove I needed the wheelchair, that they weren’t available for just anyone. There were no questions asked, just sign here, pay here, and pick up your wheelchair over there. Everyone was friendly, no one made me plead my case, but I still felt humiliated and broken as I was wheeled away in my assigned chair. I have seen far too many videos and posts from people who have been judged for not looking “disabled enough” or “sick enough” and as someone who really hates anything resembling confrontation, I live in dread of having one of my own bad experiences to add to the list.
When I was reunited with the rest of the non-coaster group, I was disappointed that my little detour had cost me one of the few rides I would have gone on. So, I made a point of going with my son and nieces on the next one. There was a nice ramp that led up to the platform you waited on. I could stand with support and for short periods, so I was able to wait in the queue for a trolley car with my son, whilst leaning on a rail. One of the workers rolled my chair away and let us know it would be waiting for me at the end of the ride. The Dr. Seuss ride wasn’t wild by any stretch, but I was glad to dip my toes in the water so-to-speak. Unfortunately, my anxiety won the rest of the day and I didn’t go on anything else.
Needing to be reliant on other people to get me places was humbling and frustrating. I had no clue how to maneuver a wheelchair on my own and didn’t think that a crowded theme park was the best place to learn. The only times I have been in a wheelchair have been upon entering or leaving a hospital. Even when I had my foot surgery in high school I didn’t have crutches or a wheelchair. My friends did push me around in a shopping cart when we went shopping, though. Anyway, I got parked a lot during our day at Universal and just sat there under the broiling Florida sun, watching other people have fun, wishing I could just be free from all of my shackles (mental and physical). I couldn’t take half the pictures that I wanted to because I couldn’t get close enough for the perfect shots. I tried to take as many as I could anyway, but I was admittedly disappointed. I don’t really enjoy a lot of rides, so when planning how my day would go I figured I could hold bags for people, and document the day with my camera.
Being unable to do either of those things left me feeling particularly useless. I just felt like a giant burden. No one told me I was. No one in my group even made me feel like I was a burden; but emotions often aren’t based on any sort of logic. Still, I continued to be relieved that being in a wheelchair wasn’t a big deal at Universal. I got to watch the magic wand show at Olivander’s, which was fun, and my oldest niece got chosen to participate in the demonstration. I desperately wanted to roam the souvenir shops we meandered through throughout the day, especially the wand shop that we spilled into after the show. It was a tighter squeeze in there, though, so I just told them to park me out of the way.
That was probably one of the hardest parts of being wheelchair bound, feeling like I had no autonomy, but also not wanting to ask for things because I felt like a chore. So, when I was parked facing a wall, instead of the sprawling Harry Potter universe in front of me, it took me a while to work up the nerve to ask someone to take me to see everything. (I will note, someone did offer to take me to the wand stations but I didn’t have a wand and I was feeling overwhelmed because my husband had stepped away for a moment.) None of the Harry Potter stuff was at Universal when I last went, so when my husband returned he took me on a quick circuit of the place and we returned to where half of our group was sitting for a bit, I didn’t know I had missed anything. I just knew that I hadn’t spotted any of the kids from our group, nor the two adults with them, that were supposed to be out testing their wands. My brother-in-law knew all the little alleys and nooks, so he took me to go find my kids.
It was really dark in the alley, though, and soon after my arrival, my daughter and her cousin had some sort of heated exchange and both of them stormed off, so my brother-in-law went after them to, I assume, deal with whatever had happened. Then one of the other kiddos needed to use the bathroom, so one of the other adults took her, and asked me if I could keep an eye on the remaining two kids. They were right next to me, so I figured that would be okay, but there were people milling about in the dark, and I felt like a big obstacle. I texted my husband, because it was overwhelming being stuck in a dark room unable to move, because I didn’t know where I was and couldn’t see well enough to figure it out either. Once I was rescued by my husband, there were so many cool things to see outside of the alley. The fire-breathing dragon was really neat, and my Dearest shared a cup of Butter Beer with me. It was worlds better than the recipe I used to make for us!
Like I said before, the people who worked at the park were really great with me. I had to use an elevator more than once, but it was thankfully no big deal. When we took the train to the next park, the gentleman who helped us board asked if I was able to take a few steps, and I said I could. So, I left my wheelchair at the door to my train car, as instructed, and limped a short distance to the bench. The train ride was pretty neat because the windows on the train were screens depicting scenery from Harry Potter, and they even had the silhouettes of the three main characters “walk” by our cabin door talking.
I don’t regret going with my family that day, but I sure do wish it had gone differently. Though, I think the experience was important because walking…or in this case rolling…a mile in someone else’s shoes is how we gain insight, better empathy and greater compassion. I needed a wheelchair that day. Even sitting I was in a noticeable amount of pain, but the walking would have been unbearable. If I had pushed myself, I probably would have ended up spoiling the rest of my vacation. It’s annoying to have these conflicting emotions of embarrassment and shame tied to needing a wheelchair, because I don’t think anyone should be embarrassed or ashamed to use mobility aids. So, why do I feel that way anyway? Especially because I said that no one I interacted with had made me feel small for needing assistance in getting around? Was it the surprise and pity expressed by those who saw me in a wheelchair in pictures I sent them throughout the day? Maybe. That didn’t help. I purposefully didn’t post any pictures of me in a wheelchair to my general audience on Facebook because of it.
But…well, there was one voice. Earlier in our day at the park, I was positioned on the opposite side of the walkway from everyone lining up to take a photo, so I limped across to them like a peg-legged pirate and held onto my husband. One person in our group whispered to another, “I think she’s faking it,” and sent a little smirk and side-eye my way. I was a bit hurt because even if it was a joke, which I was really hoping it was, it gave voice to one of my fears; The fear that everyone was looking at me thinking similar thoughts. I brushed it off as best I could because once a kind park goer had snapped the photo for us, we were back to hustling to the next destination on our itinerary.
Just under half of us left early because we were exhausted, while the rest paired down their supplies and sent the rest with us, so that they could hit some more rides. I was grateful to not be the only one who was ready to go back to our rental home. It made me feel better about needing to get out of there.
After a bit of rest, some AC, my heat pack wrapped around my middle, and another round of Ibuprofen finally taking effect, I was a lot more mobile than I had been all day. Later that evening, I walked into a room and the same person who had made the comment about my faking it looked at me and said something along the lines of I had made a miraculous recovery, and gave me a sarcastic clap. Again, if this was an attempt at humor I didn’t find it funny, and I was hurt either way. I didn’t want to cause a conflict though, so I just mumbled I had been in a lot of pain, and shuffled away.
It was a kid who said those things, not an adult, but I still don’t know if those comments were meant to be teasing in a ribbing kind of way, or truthful thoughts veiled in humor. My husband told one of their parents what had been said, but I just wanted to forget about the whole incident and my painful day, so I laughed it off and said not to worry about it. But it definitely had an impact on me hearing those comments and so I thought that maybe if I wrote about all of the jumbled up emotions I felt on that day it would come untangled. I don’t think it quite has, but I at least placed them in one spot. Maybe reading this through again I will be able to figure out what I am trying to convey. Either way, it really stinks that the people you love can be the voices that hurt you most. It would have stung if it was a stranger, but I am left sitting here wondering, “Does anyone really understand? Do they pretend to? Am I a burden? Do they think I am just not trying hard enough? etc.” I don’t have the answers, but at least I got this off my chest.
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