Last week I celebrated my little brother’s high school graduation and my completion of chemotherapy with a family trip to Disneyland in California. I should note here that my family suffers from an untreatable form of Disney insanity. While we love most things that spring from the House of Mouse (even more true now that they own the Muppets, Marvel and Star Wars), we have a special addiction to Disney vacations. Lots of bloggers, columnists and other critics have opined that a vacation to central Florida in the July or August heat is tantamount to suicide or child abuse. Don’t tell that to a family who has taken that very trip more than 20 times. While you malign our vacation destination preferences, we’ll be riding Space Mountain again or hitting up another glorious Disney buffet.
But this post isn’t about Disney World. It’s about Disneyland. Specifically, it’s about my family’s first trip to Disneyland in 10 years and the first vacation I have ever taken on which I could consider myself (very broadly defined) disabled. Six months of chemotherapy and couch-sitting have left me incredibly weak and uncharacteristically worn out. While you might not notice this if you’re just spending an evening with me or seeing me in passing, it’s nevertheless true. I’m regaining weight and some of the hair is slowly coming back, but I’m not the man I was before Lumpy. My immediate post-chemo wellness is a lie that I often buy into myself, but when I push too hard and find myself in need of a nap, I remember that I have limits I didn’t have before and that getting back to 100 percent will be a process, not a switch that gets flipped as soon as you’re done with chemo.
This reality presented a bit of a problem when we realized that the Disneyland trip was scheduled for 9 days after my last chemo session. My still-debilitated immune system meant that an airplane ride to faraway California was a recycled air, germ-infested hazard that could land me in the hospital with an infection. And while California weather is not Florida weather, it would still be hot and sunny (I’m not supposed to be in the sun while taking the medication that I’m on). Most difficult of all, Disney trips are inherently physically demanding, with long hours in the parks and lots of walking–especially in Disneyland, where there are only two parks and a few hotels crammed within the developed city of Anaheim. There would be no bus rides from the hotel to the parks. Even the monorail is a 10-minute walk from the hotel.
But there was no way that I was going to sit out this trip! We decided that the only realistic solution was for me to wear a mask on the airplane, wipe down my seating area with disinfectant wipes and hope for the best. We would also rent a wheelchair for the duration of the trip, and my wife, parents and brothers could fight over who would get the honor of pushing me around.
This would not be my family’s first Disney rodeo with a wheelchair. In our early days of Disney World trips, we brought along my grandmother, who lived with us for 14 years before she passed away and attended nearly every Disney trip we took in that time. Her arthritis confined her to a wheelchair on these trips, and we would all take turns pushing her through the parks. But I don’t think I ever really considered her experience of the trip until I was the one being pushed around.
The airplane ride to California was thankfully uneventful. I wore my mask and didn’t get too many odd stares from people or flight attendants. Just to be safe, my Mom bought a heavier duty mask than the ones they hand out at the hospital, which had a bendable metal strip on the top. I don’t know if I just didn’t bend it properly or if my broken Roman nose made comfort impossible, but the top of the mask rubbed destructively throughout the flight, and when I got off the plane, it looked like I already had a sunburn on the top of my nose.
When we disembarked, I had my initial taste of the wheelchair life. An airport attendant was waiting for us on the jetway with my first black-and-silver chariot. My Mom tried to convince the attendant to let one of my family members push me, but she said that she wasn’t allowed to leave the wheelchair and had to do it herself. Whatever stares I didn’t get when I was on the airplane were immediately made up for when those waiting for their flights at LAX got a look at a young man in a mask being pushed around in a wheelchair by a woman who was half his size. At this point, I decided to at least lose the mask.
When we arrived at our hotel (Paradise Pier Hotel, for those of you that it might mean something to), I received the wheelchair that would save me from miles of walking over the next four days. According to Theresa’s FitBit pedometer, it saved me 19,000 steps on the first day alone–and that was only a half day of park hopping! You’d think it would be easy to get used to the good life of being pushed around in a wheelchair, but at least for me, it was not. I greatly appreciated my family’s willingness–everyone happily took a turn and sometimes even fought over the privilege!–but always felt like it wasn’t really necessary, even though I knew that it was. Whenever I decided to disembark for a bit and walk around on my own two legs, I was always glad to have the chair to come back to. Even so, I learned several lessons that illuminate my experience of Disneyland in a wheelchair and will definitely inform my future behavior around anyone who is using a wheelchair.
- A wheelchair is the ambulance of the sidewalk.
When there’s a wheelchair in your group at a crowded place like Disneyland, it’s easy to use the chair as an instant Moses’ staff that parts the sea of tourists and clears a path. The only exception to this rule is the oblivious tourists who stop in the middle of the path without looking around or the small children who don’t yet know the rules of the road and dangerously dart out in front of the chair’s path. I got used to using my hands a lot to both direct my driver as to where we should go and to try to fend off children (or adults) who were about to get the backs of their legs rammed by the feet of my wheelchair.
- Don’t let the wheelchair be the wart on the front of the group.
While the wheelchair is great for parting crowds, sometimes it’s easy to forget that there’s someone actually sitting in the chair. Before I made my feelings known to the rest of my family, I felt somewhat isolated from group conversations, as the group was always walking behind me and I had no way to participate. Everyone soon made an effort to spend some time walking alongside me so that we could chat that way. Nevertheless, part of the reason that I made sure to get out of the chair at times was so that I could be the master of my own destiny and walk wherever I wanted and with whomever I wanted. It’s a strange and sometimes frustrating feeling to have your mobility limited by where your chair can go and who can take you there–and I wasn’t even that limited!
- Don’t judge a rider by their wheelchair.
I don’t know if this is just a “Matt Is A Terrible Person” thing or if everyone does this to some extent, but as a frequent theme park-goer, I would often see young people riding around the park in a wheelchair with their friends or cutting to the front of the line and rising from the chair with no sign of a cast or limp. My immediate thought was always “Nice job cheating the system, moron.” Now I wonder how many of those morons actually had cancer or some other invisible right to be pushed in a wheelchair. Who’s the real moron? Too bad I had to roll a mile in their shoes to get that wakeup call.
- Disneyland knows how to treat its wheelchair customers.
If you do have a legitimate reason to be in a wheelchair, Disneyland has an awesome (and rather fair) system in place to ensure that you can still enjoy the park to the fullest. In our case, it allowed us to enjoy the park in an even fuller way than we would have without it. Basically, it’s a system of rides-by-appointment. You go to one of the many info centers around the park, tell them which ride you want to go on, they scan your pass and tell you what time to come back based on the current wait time for that particular ride. When you come back, you enter through the exit or through the Fast Pass entrance and get to board the ride almost immediately. We used these “chemo passes” (as we decided to call them) in conjunction with the regular Fast Passes and got to ride (at least once!) pretty much everything in Disneyland and California Adventure that was on our list. Thanks, Disney!
All in all, it was a fantastic vacation–both as a celebration of my imminent return to normalcy (and honestly it felt like the kickoff of my delayed summer!) and as an eye-opening glimpse into what people in wheelchairs experience. It was wonderful to be able to travel again and to get a chance to spend so much quality time with my family. It’s definitely a trip that I will never forget!