I’ve put it out there before, it’s one of the reasons the
amount of content on the Gazette had to slow down, but I was diagnosed with
Rheumatoid Arthritis a little over a year ago. It 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. Of course, with the RA it meant a whole new lifestyle, a
whole new perspective, and a whole lot of medications. 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. 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 creatures. 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 wear a mask to keep myself healthy. We’ll get
further into the mask bit a little more 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 the missus,
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 constant 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.
All of the personal pieces are still debates and still 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?
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, we come to a visit to Walt
Disney World battling these constraints. There is stress, there is a lot of
physical demands, and there is very little of it that you can plan and control.
Basically, the worst possible situation I could have imagined for myself. Ahead
of the trip the missus and I sat down and had several long discussions.
Should I wear a mask while visiting? With an extremely low
functioning immune system, I should do all I can to protect myself and my
health right? Is the stigma of “what is wrong with that guy?” worth it? It
isn’t 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 get better. I wore the
mask, sporadically. Basically, I’m not entirely ready to call myself out
everywhere I go. It’s vain and I know it. I’ll probably change my mind in the
next few years, but for now I’m still rolling the dice, and dealing with being
sick more than I’d like to be.
Should we rent a wheelchair? I immediately opted away from
the ECV option, if only 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 was, again, “no.” The long answer was I didn’t
want to have it up front, but if I got 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 needed it.
Outside of these two considerations, we didn’t have a whole
lot else planned ahead of time. Just like our daily lives it was going to be
putting one foot in front of the other and deciding how best to meet the day
each and every day.
Once there I was able to push through the first day or so
with high energy. I was ignoring my body because my adrenaline of being back in
Walt Disney World sustained me. It was definitely not the smartest thing to do,
but my body didn’t notice so I didn’t take the time to think it through.
The first time I did notice something was when the
exhaustion hit me in the afternoons. I still pushed through, but I mentally
changed my strategy. Heck, I’ve always loved the long shows and rides, so this
was a blessing in disguise. I got to spend some time in The American Adventure,
on Ellen’s Energy Adventure, The Great Movie Ride, 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 the
entire time I was there.
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 tucked tightly against my chest weren’t there. The pillows I did have
from Disney 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 will keep
you up and uncomfortable all night, regardless of how exhausted you are. Next
time, I packed some of the comforts of home, just so I could sleep.
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 I
leave at the footsteps of 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 couldn’t plan and 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 allowed me to enjoy myself a little more leisurely than if I
had just been winging it.
The other thing that saved me were the friends I surrounded
myself with. Between the missus and friends who were willing to accommodate
what I needed, when I needed it, I was able to have a wonderful trip. 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 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 road,
but not my road, and certainly none of the rest and recharge that Walt Disney
World has always brought me. I don’t know what I hoped this article would give
you, but I hope you learned something, or if you’re living with this disease as
well, maybe you found an idea or a glimmer of hope. I hope it brought you
something, because I know it was a gift to me.