I had a Disneyland pass many times in my life. Getting back there today after so many life changes really hit me. I was so happy to go, and yet it really opened my eyes to how much life has changed.
In my teens, I went to Disneyland all the time to meet up with my meddlesome and expressive friends. Sometimes we traveled in huge packs of fifty or more and would take over the rides. I dyed my hair all sorts of colors back then and wore big tall combat boots and long black flowing clothes. Okay, maybe not that much has changed. I would walk straight up Main Street and people were quick to get out of my way. I walked with force and agility, pushing through the crowds to go meet up with my friends. Security didn’t know what to do with us, but we had a great time. Those were the days!
I kept going and getting passes over the years, but went less and stopped renewing my pass. Friends and family still go and suggested I come, too, but I always just said that I wasn’t up for it anymore. They mentioned wheelchair and I cringed. I didn’t think I was “that bad yet,” whatever that means. Well, I was getting homebound and was only leaving the house pushed in a wheelchair or with a cane for doctors appointments and occasional meals out. I realized a wheelchair was actually a pretty great thing. Now that I’ve had my power chair for a few days, I have been excited to go use it and get out of my house! Going to Disneyland seemed totally ridiculous. Getting a whole year pass, even more problematic! What about my fatigue? What about my need to lie down to calm my tachycardia and wonky blood pressure? What about logistics? Blah, blah, blah.
I started today trying to cover all my bases, but got super distracted with my new eye makeup. I started burning through my spoons early! But, as mentioned in my last post, I am getting hyped about Dysautonomia Awareness Month and turquoise, so I bought a bunch of turquoise eye makeup. I also wore my Dysautonomia Awareness Month tank top today and brought back the mermaid leggings. I carried Dysautonomia flyers in my handbag and had my little Medical Accommodation Card and POTS Stickman card hanging from my handbag strap. I had a water bottle, normalyte packets, and my cane. I seemed pretty prepared.
My husband and I borrowed my dad’s car and took off for Disneyland. We parked pretty easily in the handicap section and got rolling. Having never gone to disneyland in a wheelchair, we didn’t know what to do. First, we got in the handicap part of the tram line, but after talking to a worker, we switched over to a bus line. It was a wait, but I rolled straight into the bus and they strapped my chair in and then we got out easily.
We got to the security check… and then trouble. They didn’t like my cane/stool combo. I checked their website before coming- folding chairs are not allowed, but cane-chairs are. I explained that I had a medical condition, explained it was okay per their website, and showed them all my little cards and flyers. They tried to tell me I had to check it in and couldn’t take it inside. Then they said to wait for a supervisor. They had me waiting for 15 minutes, then they found the supervisor, who said it was fine- it’s a mobility aid. I mean come on- it’s attached to my wheelchair. So, not the best start. Then the ticket line took over an hour and a half.
I haven’t been able to do anything but lie down for that long in a while. I was feeling stubborn. I kept wiggling my toes and doing whatever I could think of to quiet my symptoms. My husband kept trying to keep me in his shadow since I am so heat sensitive. Then, when we got to the front, the worker was having a terrible time ringing us up for our annual passes. She had to cancel the transaction, refund our card, and bring in two supervisors. We just want to buy annual passes, nothing special, folks! The poor worker was really flustered and her supervisors seemed concerned for her. I felt so bad for her, but I was already there for over two hours and hadn’t even gotten into the park yet. Most of the previous talk about getting a pass was could I even last two hours? and here we were burning that much time just getting in.
We did finally get in and, of course, there was a parade. So, I got to maneuver my chair through a dense crowd in a narrow sidewalk. We made our way to New Orleans square and put our names in to get a table at a cafe. While we waited, hubby got a mint julep. The cafe was nice and I was able to get the power chair in easily and pull it up to the table. I even got a salad without any lactose or other scary stuff in it. We had a really nice meal and I reflected on what it used to be like to go there as a teen versus as an adult in a wheelchair. My husband hung with the same crew back then and probably got into more mischief at Disneyland than I ever did, so he new what it had been like. We mused about getting older and changes in life. I felt a mix of so many things: elation for being out at a place I loved, love for my husband who was so supportive and encouraging, grief for the old me who walked with confidence, empowerment for trying something difficult for me, fear that I would never be able to walk around again, and hope that I will improve with time.
After eating, we cruised around and made our way to Fantasyland. I love the ponds in front of the castle and we paused there for a bit. I used to spend so much time near the castle back in the day- over by Snow White’s wishing well. We went into some shops. I really wanted to get some mouse ears, but couldn’t quite settle on a pair. I kept tearing up as we went by familiar rides like the teacups and Alice in Wonderland.
Disneyland has always been part of my life and I thought I had to let it go. Moments like these are so precious. It was like the wedding. I had to work so hard to have a beautiful experience and knew I would pay for it, and I did pay. Still it was worth it. I was out way too long today and I knew it. Still, it made me so happy. We started heading back to Main Street and hit the big Emporium on the way out before leaving. When we exited the park, my husband took some pictures of me outside to chronicle our big day. And just when I thought it was done, we went to the big Disney store in Downtown Disney on the way back to the car. I finally got some ears- silver sequins! We took the footpath back to the car and skipped the bus and trams. It was quiet and peaceful.
I feel like I got something back today, some piece of myself that I thought I had to let go of, but it still remained. Despite everything, I am still me. I am thankful to be the person I am. I am glad I was never normal and learned to let go of fitting in early on in life. I already had tools to deal with standing out and making people feel uncomfortable before my disability became so prominent. I can handle the looks and I focus on the smiles. I’m used to being hassled by security and know how to stand up for my rights. It’s hard to sort out my identity now that chronic illness and disability have taken up such significance in my life. I’m making room that. I have to. I can still be me.