07 September 2021

Walt Disney World 50 for 50: Hands, Arms, Feet, and Legs Inside the Vehicle

The Gazette has never had a ton of comments on our articles or photos, but I’ve treasured each and every one I’ve gotten. One of the most impactful stories I’ve ever shared was my explanation of visiting Walt Disney World as someone with Rheumatoid Arthritis. It wasn’t the outpouring of love, which I appreciated, but those who share my diagnosis or a similar auto-immune diagnosis who felt seen, who took something away from the article, that moved me the most. It’s been five years since I shared this story, and I hope that sharing it again, with a few tweaks, may be a balm or helpful to someone else out there who hasn’t seen it yet.
My diagnosis of RA was a wrecking ball to my life and what I believed would be my future would be, but it was also a godsend because I finally had an answer as to what was happening to me. The not knowing was the worst part. Trying to explain the pain away as a bump, overuse of a joint, or the exhaustion as just getting a little older or feeling like I was just lazy. Knowing was power. Of course, with the RA it meant a whole new lifestyle, a whole new perspective, and a whole lot of medications cycling in and out of my life. It has also meant a whole new way of exploring Walt Disney World, but first let me try to provide a little insight into my daily life.
RA is an invisible disease for the most part. The way I describe it is that my immune system is an overachiever, just like me, and doesn’t know when to stop. It goes from attacking illness and foreign bodies to attacking healthy parts of my own body. It causes joints to become inflamed and swollen. There aren’t a lot of solutions that don’t require your immune system to become nonexistent, because you have to put the monster to sleep to feel better, even if that monster is what protects you from other illnesses. Your energy level sinks like a stone and you find yourself negotiating with yourself just to make it to the bathroom in the middle of the night. The only time its visible is when I am in incredible pain, called a flare, or if I choose to use other tools at my disposal, such as a cane to steady myself or to wear a mask to keep myself healthy (and this was years before Covid was a daily threat). We’ll get further into the mask bit a little later. One of the best descriptions of living with RA comes from Chrsitine Miseradino and is called The Spoon Theory. Go ahead and read it, I’ll wait.
Once I had my diagnosis, my first thought wasn’t how this was going to affect the Gazette or how it was even going to affect trips to Walt Disney World. I do have my priorities straight after all. No, my first thought was how this was going to affect my family, particularly my wife, and the conversations we had been starting around having a child. Then I thought about my health, I was just trying to get myself back into running, and we had just bought a house and I was thrilled to finally have a yard, a yard that I now wouldn’t be able to work in as much as I wanted to. Working with youth in my day job and having to be up, down, and constantly moving was also a concern, as I wasn’t sure I could be as mobile as I needed to be. Living with RA was going to teach me all about balance.
In the end, we tried to have a child and that ended in a lot of hurt for both of us. I can walk, not run, but need an adaptive device (i.e. walking stick) because I’m prone to falls. I mow and weed my yard twice a month at most, I can’t do any more. I've let some of the yard go wild and almost completely giving up on my garden. I work for an organization that understood my love and passion for working for youth was going to take a hit, but found a place for me as a grant writer, leading the success for both myself and the organization. I’ve also learned to enjoy our neighborhood, developed my camera skills around our house (not in a Rear Window way), and started traveling as much as we could, taking advantage of whatever my body will allow me to do now in case mobility becomes even more of an issue when I am older.
There are still personal pieces that bring debates and keep me awake at night, not that joint discomfort is helping with sleep, but I digress. Everything is an internal dialog. If I eat this hamburger, are my elbows going to regret it tomorrow? If I push too hard and mow my whole yard on Saturday morning, am I going to be able to walk to dinner Sunday night? If I don't take a nap when I get home from work, am I going to make the brain fog worse tomorrow? Honestly, most of the answers I’m able to give myself are a definitive “Maybe!”
The tenants to remember with RA is that it is mostly invisible to passersby and colleagues, but it is completely and utterly exhausting, and you never know when or where it’s going to strike, only that a strike is going to happen sooner or later. So, with that as our basis, we look to a visit to Walt Disney World while confronting these constraints. There is stress, there is a lot of physical demands, and while you can plan for as much as is humanly possible, there will be things that pop up which are simply out of your control. The more you travel with your diagnosis, however, the more you feel like you have some knowledge of how your body will react to the strains of such a trip. It can be the worst possible situation you could imagine, but it doesn’t have to be. One of the best pieces of advice I can offer is that, ahead of a trip, sit down with the friends and family that you will be traveling with and have a long discussion about expectations and possibilities. Here are some of the questions and conversations we have had over the years.
One question that has come up on every trip, but is even more common now, is should I wear a mask while visiting? Prior to 2020, and living with an extremely low functioning immune system, means I should do all I can to protect myself and my health and have opted for masks in several situations. In particular, I have always used them during air travel and during flu season. In years past I felt as if there were this stigma of “what is wrong with that guy?” Let's bury that right now, it hasn’t ever been what’s wrong with me, but rather I can’t run the risk of getting whatever illness you or your child has, because it is going to have a lasting effect on me beyond the fact that I’m going to take longer to heal. This is even more true in the world now, but now my mask protects other guests as much as it protects me. In previous years I wore the mask sporadically, now it is as much a part of my wardrobe as my pants or shirt.
Should we rent a wheelchair? I immediately opt away from the ECV option, mostly because I was convinced I would do something wrong with the controls and end up running over some other guest just trying to enjoy their vacation. The short answer to the wheelchair question has always been, to this point, “no.” The long answer is I don’t want to take away a device someone else may need. That said, we have decided on the longstanding understanding that while I may not get a wheelchair at the frontend of a trip, but if I ever get to a point where I knew I couldn’t walk or carry myself any longer, we would grab a wheelchair for the days and times that I need the extra support.
When am I going to need rest? Once we arrive I am always able to push through the first day or so with high energy. Maybe it is ignoring my body because my adrenaline of being back in Walt Disney World sustained me. It’s definitely not the smartest thing to do, but my body doesn’t seem to notice so I didn’t take the time to think it through. It does not take long for me to notice the exhaustion that hits me in the afternoons, however. There are ways to combat this, but the best way I have found was to head back to the resort and catch a short nap if possible or chill by the pool during the heat of the day, and making these breaks part of the plan.
During the first few visits after my diagnosis we tried to push through, but I mentally changed my strategy. I’ve always loved the long shows and rides, so this was a blessing in disguise. I spent some time in The American Adventure, The Great Movie Ride before it was removed, the Enchanted Tiki Room, multiple rounds on the PeopleMover, it’s a small world (have you ever noticed how many quiet, seated, and dark adventures there are in Walt Disney World?), or sitting on a bench and watching the parade go by. Wonderful! Sure, we called it an early night, but you need those every once in a while, when you at Walt Disney World, right? Wrong, I would push myself so hard in the mornings and during the days that I did not see the sunset or a single fireworks display on the days I pushed through.

During the heart of a trip you notice a lot of things you hadn’t planned for. Like the rest and exhaustion piece above, the next thing I noticed is that I wasn’t in my own bed. The pillows I use every night to keep my knees from touching one another, or one of my arms pressed firmly against my chest, weren’t there. The pillows I did have from the resort were okay, but they weren’t what I was used to. Neither were the sheets, comforters, and mattress. All of these pieces add up and they have caused a couple of sleepless and uncomfortable nights, regardless of how exhausted I was. On subsequent trips I have packed some of the comforts of home, just so I could sleep, usually an extra pillow or two. It may not be a full set-up, but it is enough to get me through.
I have long been a believer that I would rather drive my car to the parks than be beholden to the transportation system. I love the monorails, ferries, motor launches, and even the buses, but I’ve always felt driving myself saved me time. Now, it saves me, period. I don’t have to wait in the elements or stand for longer than I need to. I can get myself to where I’m going before my tank bottoms out below Empty.

Driving my own car also allows for me to drive to Walt Disney World and set my own break pattern, not stuffed into a chair on an airplane where I can barely move and stretching is a luxury. I used to leave after work and drive straight through to Walt Disney World overnight, crashing the gates first thing the next morning. Now, I tend to make the trip in two days with a stopover at a hotel somewhere to rest and reboot. Part of this has a direct correlation to the RA, but I also know part of it is that I’m just not as young as I used to be.
I said earlier that I wasn’t in control, but that’s not entirely true. Planning for a worst-case scenario, something I don’t like to do because I’m eternally optimistic, can be extremely helpful. You may not need to utilize any of the plans you make, but know what and where your options are has allowed me to enjoy myself a little more leisurely than if I had just been winging it. I plot out each day on an itinerary, with a morning and evening park. This allows me to get up when I’m most functional and take advantage of that high energy level in the mornings, take a rest at the hottest part of the day, and meander a bit through a park in the evenings, usually with a lovely meal somewhere to break up the walking.
The other thing that saved me were the friends I surrounded myself with. Between my wife, family, and friends who were willing to accommodate what I needed, when I needed it, I have been able to have many wonderful trips. I am eternally grateful to all of them, and don’t know what I would have done without them, regardless of the RA.
The mantra I have repeated time and again to people who ask about how RA affects my life is simple, “it has changed how I will live my life, but it will not change what I do with my life.” I don’t use it as an excuse, or something to brag about, and it certainly does not define me. I do use RA as something to laugh at. My hands clench up? I pretend to be a T-rex (of the “I don’t know how well this plan was though through” or “If you’re happy and you know it clap your… oh” variety). My leg is exhausted and being dragged around? I name it Smith or make some other joke about table legs working better than mine.
Rheumatoid Arthritis has changed my life, but perhaps I appreciate the world more now than I ever would have or I cherish those around me more than I would have. It is a learning experience, and I am a life-long learner. Quite literally now. It has changed the way I will walk down the roads ahead of me, but it is still the road I chose to walk down. There is still a magic to what I find Walt Disney World, it may not be rest and recharge, but it is inspiration and drive.
I don’t know what I hoped this article would give you, not when I first wrote it and even now as a modify it. If you don’t have an auto-immune disease, I hope you learned something, especially if you know someone with such a diagnosis. If you’re living with this diagnosis as well, maybe you found an idea or a glimmer of hope. It is my hope that you feel seen if nothing else, and that maybe this explanation offered you a momentary peace of mind about an upcoming trip. I hope it brought you something, because when I am able to share my life with you, it is a gift to me.

1 comment:

Mini-V said...

Learning more about RA helps me to not push you when you come down to FL.